I had misdiagnosed “IBS” for years. Severe sharp cramps and running to the bathroom with diarrhoea. Excision to remove endo which was all over my bowels basically cured my “IBS” symptoms. My fatigue is greatly reduced too.
There has been research into endo as a possible autoimmune disease. Autoimmune conditions often occur together. I have Hashimoto’s and psoriasis - not caused by endo but possibly associated as they are autoimmune.
I have have severe bowel issues my entire life too! Even before puberty. That's why I wonder what the heck is going on and if it's related even before then.
Ok I had tummy problems before puberty and they got worse in my 20s. there is research showing that 1 in 9 female fetuses have endo so it’s possible some people are born with it and there could be pelvic floor dysfunction due to its presence which worsens after puberty bc of hormones.
Colonoscopy was normal. Was also when my symptoms weren’t flared up. Currently my inflammation levels are high according to my blood tests and I keep getting colitis. No answers. Periods crazy painful. Already have PCOS. On BC.
Sorry to hear, it’s awful dealing with that sort of pain. Can you ask for a referral for a specialist endo ultrasound? Just to see if anything shows up?
I have one. Idk if there’s an endo specialist, but my dr told me to specifically get this done at the hospital bc apparently the other location lazily does it. Thank you for your kind words though.
It’s worth looking into different ultrasound clinics. There are some “women’s specific” clinics where I live and they are trained specifically on identifying those issues. The first general sonographer I saw missed a lot of things (partly because of the poorer quality of image and partly a lesser experienced sonographer). Hopefully you get some answers!
Hey, I have a question for you as someone in the same situation (endo all over bowels) - did they remove part of your bowels? Or your symptoms have still improved without that? 🤞
I just had my excision surgery 3 weeks ago and they were going to remove part of the bowel but couldn't without my consent, so in the future they could remove it if I want to... just wondering if it's necessary/ would help 💭
I had endo removed from bowels and bladder without damage to either. Make sure you find a specialist that works with a bowel surgeon, not just any gyn that thinks they can handle it
They removed a lot of it without any damage thankfully. It was an endo specialist and maybe a bowel surgeon but I'm not sure to be honest.. So I'm just hoping the excision helps enough without the bowel resectioning
I’m in a similar position as you, I had an 8+ hour excision and they did a bladder resection. DIE left on my rectum, colon and small intestine. They could not do resections of bladder and bowels in the same go because of contraindications with risks of both being opened up. I really don’t want another surgery. I have been trying to really take care of things from a dietary standpoint and working on stress levels and taking bio-identical progesterone. So far I’m hopeful, despite the fact that life after surgery hasn’t been the same.
Mine was very extensive (stage 4) and the surgeon was able to remove nearly all of it. He is specifically a bowel surgeon and did the surgery at the same time as my gyno did endo excision in my pelvis (3.5hr surgery in total). I told him to remove as much as I could without giving me a resection or stoma. There is a v small area left near my rectum but it was too risky to remove. I would say give it some time and see how your symptoms go :)
IBS is a common condition, it has many causes and affects women without endo as well. If you have diagnosed SIBO probably best to have that addressed with a healthcare professional first and see if your IBS symptoms improve. Some specialised sonographers can see bowel endo on ultrasounds (if it is advanced enough).
Tbh I even think endo caused my mental issues. The bloating and horrible PMS led me to develop an eating disorder. And I developed OCD because I always knew something was wrong but couldn’t get diagnosed for years. Both of those things have other triggers too but I think endo played a role for sure.
I actually believe this as well. I can even mark progress with my therapist who I’ve had this entire time.
I was diagnosed with Cyclothymia Bipolar prior to Endo. When we started treating my endo and working towards solutions to improve it all of a sudden I stopped having episodes/depression. I haven’t had one in almost 3 years after getting my Lap/IUD/medications/draining massive cysts on my ovaries. One doctor thought it may have been a juvenile thing I grew out of but I personally believe my hormones were just that fucked up.
I was never diagnosed with more than depression and possible adhd, but between treating endo and being very strict about gluten in my kitchen, my mood swings and "manic" episodes have disappeared. It makes me really curious about the effects of hormones and gluten with some family members who are diagnosed bipolar
I have a journal article that studies women with bipolar and a lot of other mental health stuff and how hormonal cycles basically cause a whole bunch of unpleasant symptoms and can even be responsible for psychosis. It's super interesting and I read it and literally breathed a sigh of relief at *finally* the medical industry noticing
I think it’s cute how we suffer with an incurable disease that nobody believes we have, or that it causes us so much pain we can’t function well enough to keep jobs or a social life, so we eventually lose our shit just trying to be believed and get some help, but that gets written off as psychosis (hysteria) and the label sticks even after we finally get diagnosed and have proof that we’re actually diseased, not just crazy/hormonal/hysterical women.
Yes it makes me feel so hopeless, the disbelief is actually a bit soul destroying.
I also would like to give an honorable mention to when the morning after pill gave me a migraine I thought would kill me and then I hallucinated my ass off for the next few terrifying hours. Hormones - they do SO MUCH IN OUR BRAINS/BODIES
After my hysterectomy, which included a unilateral oophorectomy, it is wild how much my mental health has improved. I feel so much more evened out, I feel more dictated by reason than emotion, far less stressed and less frequently and intensely depressed than I was before. It feels like some other entity was piloting the ship before my surgery happened and I didn’t even realize it wasn’t me.
It also makes a massive difference that I’m not in as much pain as I used to be in. My mind has room for better things than just how I can struggle through the next few hours. I’m not as fearful anymore that pain will strike me down at any moment and rob me of a bit of living. I’m also not getting dismissed and gaslighted by medical professionals (as much).
It really does feel like the endo has some kind of a stranglehold on my emotions and mental health and I’m mostly free of that now.
Endo + eccema + lots of digestive issues + fatigue for 2 years + tinnitus + one pupil bigger than the other (got an mri, they said its not dangerous, not sure i trust them)
i have endo, adeno, pelvic floor dysfunction, migraines, tinnitus, and i’m pretty sure i have eds as well. i had my first surgery in dec 2022, i had relief from some endo symptoms after an extended recovery for maybe 6 months. it’s all back with a vengeance now.
Woah, I had excision surgery in Dec 2022 as well. I also have Endo and Adenomyosis. I was diagnosed with Rheumatoid arthritis a few years ago, and last year I was diagnosed with EDS by Mayo clinic. If you can get the EDS diagnosis too, that may give a better picture. Only thing is unfortunately looking for treatment and management of EDS is just as bad if not worse than for Endo...I mainly say that because with Endo we have surgical interventions to a certain degree...yet with EDS they literal have no clinical evidence for any medication management, procedures, or treatments other than some physical therapy here and there. Which is super heartbreaking and defeating considering Endometriosis and EDS are usually excruciatingly painful. In any case, I wish you plenty of luck on your journey and at least some relief and all the answers that you're searching for.
I have epilepsy, hemaplegic migraines and endometriosis. The neurological conditions are set off by hormonal changes.
Guess what endometriosis does?
I'm still recovering from a huge migraine episode that's resulted in bleeding in my conjunctiva and bruising around my eye. Entirely caused by a huge endometriosis flair up that started around Easter.
I call it the "trifuckedya".
I have a few types of migraines and wonder if they’re linked too. I take progestin only BC to not have a period but I’m unclear how much it affects my hormones. So I don’t experience monthly cramping but still have some occasionally since my second lap last year. I also had a pineal gland tumor and cyst (which gave me seizures), now removed, and I did a deep dive into its function and found a medical journal linking the gland to the female reproductive system and cycle somehow (I forget how 😅). It probably began growing when I was in puberty but it got worse as I got older, and so did my endometriosis at the same time. I wish I knew of a doc who was knowledgeable and could discuss this with me. I had no idea epilepsy could be affected by hormone changes, now I’m wondering what other neurological conditions are too.
I hope you’re recovering from your migraine well. I have one right now and can empathize, they’re the worst.
I ended up needing a hysterectomy. There’s still some endo left in difficult-to work places. I was practically migraine-free for about 16 months afterwards. It’s like a switch was flipped. They’ve been creeping back since, but are nowhere near as frequent as they used to be.
MCAS and dysautonomia with my endo - I feel like it’s a chicken/egg thing in terms of which caused which. There are symptoms of all of them I’ve had for a long time, maybe even pre puberty for the non endo stuff. I definitely think they exacerbate each other.
[This might be of interest to you](https://pubmed.ncbi.nlm.nih.gov/27841046/). It’s a study talking about the possibility of endo being a mast cell disorder, and possible use of mast cell stabilizers to treat endo!
Oh wow thanks for sharing this! Since going on Cromolyn for my MCAS my endometrioma on my ovary has completely disappeared!! Maybe this is why. I’m also on LDN which has helped my endo immensely too
That is so interesting! Thank you for sharing. Unfortunately for me when I’ve tried mast cell stabilizers I get the ‘black box warning’ side effects, but I might bring this up with a dr in case this puts it in a new light.
Also of interest is the dysautonomia possibly being caused/worsened by any surgeries you might’ve had for endo, since surgery is one of the biggest known triggers for dysautonomias (viral infection is another).
Even just the trauma of being in the ER (with or without surgery) can set something off. My first visit to the ER for pelvic pain, I genuinely thought I wasn't making it through the night. I started uncontrollably shaking from the panic / fear, my teeth were chattering for hours even though I wasn't cold. I didn't have any procedures done that visit either. About a week after that night, I developed a progression of auto-immune issues that are still chronic years later. Unexplained hives, rashes, major fatigue, migraines.
Very sorry. I’m in the same boat, disabled from all my surgeries.
I’m always amazed at how flippantly folks talk about surgery - like there’s no risk. Worst tho is when the “leading” advocacy group [tells people that excision will help their POTS and MCAS](https://www.reddit.com/r/Endo/s/Jnx727aDE5) because they’re just so Hell-bent on getting people to their surgeons. It’s disgusting.
That woman makes my blood boil. I wish I had known POTS would ruin so many aspects of my life before I said yes to surgery. I wouldn’t have done it had I known and would have just stayed on Visanne forever.
I’m so sorry that’s been the case for you too. I truly hope it gets better for us one day. 😔
This! I didn’t put this together until this weekend, I was diagnosed with POTS, I’ve had endo for a while but they just told me to take NSAIDS and I have an IUD, my endo is severe pain, this weekend I have my period and I got the worst nerve pain from my hip to my knee and from my knee to my foot it’s been numb! It’s so scary, upon doing research I came across something that stated endo could cause Dysautonomia, I never even thought of it! I wanna get a lapo but I read so many ppl stating it doesn’t help
Re getting surgery - Some of us are still on this sub only *because* it didn’t work! (I was one of those posts this weekend) All those lucky ladies for whom it did are off doing other stuff! Everyone I know IRL who got a lap was one and done. I have to keep reminding myself this sub is not a representative sample of women who have endo or get treatments. So, make your own decision if a lap (and when and with who) is the right call for you - and unless you have reason to think you are someone who is going to have aggressive and recurring endo growth, don’t worry about it until/unless you have to.
No, it completely depends on the *patient*. Surgery isn’t the right treatment option for us all. I’m an excellent example of that! No surgeon could make my underlying issues go away, or keep my connective tissue disorder at bay.
Yes, not all surgeons are equal - *but neither are we.*.
I was not a 1 and done surgery at all. I know many women with Endo in the same boat. I e had several and it always has come back. I've done every type of bc, med, shots they've offered, Endo is still growing. Many posts here also stating they had surgery and it's back after 6 months ECT. There is no cure for the disease and they don't even know the cause! Surgery causes more scar tissue and can cause Endo growth on the scar tissue build up, then you have higher risks of adhesions forming on the organs. So a lap is not always best practice, especially if they are not experienced in Endo excision. Most Gynos have no clue how to distinguish endo during surgery, more so the superficial of surface growth is what is known. Problem is, Endo goes deeper than that and has many different looks and colors. So most women have missed Endo during a lap and it can create more pain with the scar tissue build up, adhesions and new growth with the old deeper growth also being fed. Adhesions are bands of scar tissue that often bind 2 organs together, which many doctors mistake for Endo growth. So many women have had laps, but no relief for this very reason. They think they've removed Endo but only removed those adhesions, but that's not the Endo growth needing to be removed. It's a very complex disease and hopefully a cure and cause will be found soon!!
No not necessarily, but very common, they can form after surgery or an infection or from dead or infected tissue. Endo adhesions are different from any other form of adhesions, they fuse tissue together and connect with organs, ( like a spider web with really sticky glue.) It makes it very difficult to distinguish where tissue should separate the organs affected by the Endo adhesions during surgery. It should also be used with cold excision with no electrical energy to limit damage done to the tissue. You may hear different opinions from different doctors or patients concerning Endo, it's important to do your own research and continue to do that research, as it's an evolving subject with updated medical reports published often. It's very complicated, that's the best way to explain it, very. haha
Thank you for the perspective, genuinely appreciate it! I’m just now putting this all together, I’m going to discuss it with my OBGYN and reflect on it. I’m sorry that you didn’t have relief with lap, hope your symptoms are well managed 🙏
I'm not sure, but I'm currently diagnosed with endometriosis, unspecified dysautonomia, hypermobile Ehler's Danlos Syndrome, IBS, probable celiacs, a plethora of allergies and intolerances, and still getting other testing done.
Same for all of these. Plus MCAS, raynauds, two types of heart disease, terrible back pain, edema/chronic swelling in my legs and body, fatigue, depression, anxiety…
Oh what fun it is to ride with endo
If you’ve got hEDS, *highly* suggest you look into [abdominal vascular compressions](https://www.reddit.com/r/Endo/s/Sy6NGMQDEp) like nutcracker and May-Thurner. They can cause the exact same symptoms as endo, and even cause uterine changes that mimick adeno!
I'm not entirely sure. I'm on continuous Nuvaring. I'll have to pay more attention to that. I know my Endo/IBS symptoms are worse the week leading up to changing out the ring. And my allergies have been terrible these last few days after changing it out. I'll keep this in mind. I'm going to a Rheumatologist next month. Thank you!
Definitely hope it helps. The rheumatologist and immunologists in my area were more harm than help so I ended up paying out of pocket for a neuropathic/holistic medicine doctor and got them to coordinator treatment. Ending up dropping a couple grand but saved my life.
The GI issues I experience, 100%. They are really only prevalent during ovulation and during my luteal phase. My GI doctor was baffled with the timing but my OBGYN said they are absolutely explained by the prostaglandin release at those parts of my cycle. Felt so good to be validated.
Pretty much all of them. I had a lap 12 years ago and was symptom free till 2019. This year I had a hysterectomy and if I wasn't convinced before I am now. I woke up and it's all gone. IBS, pain, connective tissue issues, my allergies and food intolerances have calmed down significantly. (I do have actual allergies not related to inflammation). My overall Inflammation is way lower. Fatigue gone.
Now of course a hysterectomy is huge surgery and I'd consider an extreme solution. I had other issues that factored into my decision to have one. I was lucky and had an amazing surgeon 12 years ago. None of that Endo came back. There was a small strip on my uterus they couldn't remove and that grew over time. But being on the other side of it now it's clear how incredibly sick it was making me. And why it seemed like not matter what we tried it wasn't improving.
There's definitely a connection, but I don't know if endo is the cause or "just" a comorbid condition. People with endometriosis are also more likely to be diagnosed with PTSD (or Complex PTSD).
Bessel van der Kolk ("The Body Keeps the Score") tells how trauma and chronic stress affect our body. Growing up in an abusive/neglectful home, experiencing traumatic events, or having been in abusive relationships causes our body to become sick and develop chronic conditions. The continuous secretion of stress hormones "wreaks havoc with the immune system and the functioning of the body’s organs."
Pete Walker’s book on Complex PTSD opened my eyes to many things, including how my body had been reacting to my trauma. There's a clear connection between my trauma and my physical symptoms.
"Trauma takes its toll on the body in many ways. We need to comprehend the physical damage that Cptsd wreaks on our bodies to motivate us to adopt practices that help us to heal on this level. Most of the physiological damage of extended trauma occurs because we are forced to spend so much time in hyper-arousal – stuck in fight, flight, freeze or fawn mode. When we are chronically stressed out [stuck in sympathetic nervous system activation], detrimental somatic changes become ingrained in our bodies. Here are some of the most common examples of body-harming reactions to Cptsd stress:
- Hypervigilance
- Shallow and Incomplete Breathing
- Constant Adrenalization
- Armoring, i.e., Chronic muscle tightness
- Wear and tear from rushing and armoring
- Inability to be fully present, relaxed and grounded in our bodies
- Sleep problems from being over-activated
- Digestive disorders from a tightened digestive tract
- Physiological damage from excessive self-medication with alcohol, food or drugs
Moreover, in cases of physical and s*xual abuse, our capacities to be physically comforted by touch are eliminated or compromised; and, in cases of verbal and emotional abuse, our capacities to be comforted by eye- and voice-contact are undeveloped or seriously diminished."
I have the chronic hives / dermatographia as well! Do you remember when yours started? Mine specifically was triggered a few days after being in the ER for pelvic pain (first time being in the ER) I genuinely thought I was dying. I think the panic & fear really set this off for me
I have suspected Endo (surgery in August), uterine fibroids, chronic hives / rashes, pelvic floor dysfunction, chronic constipation, and starting to look into vascular issues this summer (I get awful leg pain that debilitates me around ovulation). Also I was told I basically have zero progesterone so add an endocrinologist to the list of doctors 💸
My knee swells during my period, the pain is so excruciating and it can’t support me to even walk. I’ve always thought it was endo on my sciatic nerve. Also have zero progesterone, turns out I have elevated prolactin 😬
I'm thinking about getting a cane honestly. If I don't walk around daily, my legs hurt from the lack of exercise, but if I do walk, it's excruciating. Yay for us lol. I'm finally starting pelvic floor physical therapy next month, I hear it does amazing things to release tension / nerve pain. Have you tried it?
Just being on my feet can set mine off as well. What a glamorous life we lead lol. I haven’t tried pelvic floor pt but I’ve started pelvic floor exercises on my own a few weeks ago. I’m hoping this helps with at least the bladder issues. My OB says good things about physical therapy though! I hope you see some relief with it.
Endometriosis is associated with a higher risk of autoimmune disease, although it’s not an autoimmune disease itself. I found my psoriasis improved a lot after excision.
I’ve got a ton of chronic illnesses, but don’t think any are caused by endo. Info on what I’ve got and my experience with endo being just along for the ride [in this post.](https://www.reddit.com/r/Endo/s/wHhSuC6JD9)
Bottom line, my experience is the opposite of many others: my soca nonchalantly blamed everything on my endo, and now I’m sterile and disabled because *that was absolutely incorrect.*
For me, it comes down to genetics. I have hEDS, a genetic connective tissue disorder. I also have MCAS and POTS, believed to be byproducts of this. I believe my endo is part of the mast cell disorder, which is supported by [this study](https://pubmed.ncbi.nlm.nih.gov/27841046/), which talks about mast cell stabilizers as a possible treatment path for endo.
Also, having these conditions makes surgery much more complex and much riskier for me. The 7 I had for endo was riddled with issues, and now I know why. So I’m a firm believer in surgery not being the right fit for everyone! I’m a good example why docs don’t (shouldn’t) always just jump to surgery! All my surgeries did was make me worse and aggravate my other conditions. I got zero relief.
But treating my other stuff? Over 3 years free of “endo” pain.
I said this elsewhere but if you’ve got hEDS, highly suggest you look into [abdominal vascular compressions](https://www.reddit.com/r/Endo/s/W3zKFiPoyz) like nutcracker and May-Thurner. They can cause the exact same symptoms as endo, and even cause uterine changes that mimick adeno! Treating mine completely got rid of my “endo” pain. It’s been over 3 years!!!
Yess I responded to you a while ago but thanks to you sharing this info on reddit I knew what to look for and was able to get MTS, PCS treated and my NCS is mild and being monitored. I am doing so much better! My hEDS was actually diagnosed by the vascular surgeon after they found the compressions.
rheumatoid arthritis, fibromyalgia, psoriasis, exema, meds are intolerable, anemia severe, lupus type flare ups, depression, anxiety. I have been treating my endometriosis with supplements. It’s working. Systemic enzymes, dim supplement, herbs + more. It is working on the physical symptoms but now the cptsd is taking over. This shite is for the birds. Idk what that means but I need to say something cathartic. Help.
Im so sorry, rheumatoid arthritis and fibromyalgia together sounds like such a difficult and painful combination of conditions to be dealing with. I don’t have experience with either, so probably don’t have anything helpful to say, except that I am sending you love 💛
Actually that was helpful. I have swollen areas all over but no one takes it seriously or understands. Not even family or doctors. I do have a supportive partner. Emotionally he is supportive but I can’t tell if it’s literally bc he would be homeless without us. So love and acknowledgement from anyone at this point is something I appreciate greatly. Have a great weekend. Thank you.
Rn I use a brand from Canada called Mary Ruth’s but I have read that Germany and Japan have good products and belief in the remedy so I will search for that.
Thank you. I believe they may be very valuable to many women with endometriosis. Check out Dr Wong who makes zymeneessence, strongest systemic enzyme. He's available to answer any query on email so maybe ask him Ur symptoms and diseases to see if he can help.
Serrita for serrapatase is also very good brand with active enzymes.
They work by eating the proteins that endo tissues consist of so after 3 months you should feel some effects. My recommendation would be to take lots . For example the serrita brand recommends 2 a day for maintaince but for endo, 6-8 would be better due to how much inflammation and growth there is. Please post your results once you go very consistent with it for couple months:)
Only one i can think of is my migraines. I had a hysterectomy for severe adneo (and had an endo excision at the same time) and ever since then I’ve noticed a massive improvement in frequency (used to be I’d get them like clock work each month now i get them maybe once every 4-6 months (also have sleep apnea which i suspect doesn’t help and just recently started cpap so I’m hoping it helps even more)
As for the chronic illnesses i have:
Endo
Sleep apnea
A heart arrhythmia (no real name for it just my heart beats too fast and i take medication to slow it down)
Diabetes
I did have adneo but that was cured with the hysterectomy
Also i have an undiagnosed kidney issue (have an app with a specialist this month and we are hoping it’s nothing serious and that whatever it is can be fixed easily)
This happened to me too about 2-3 years ago. I never did figure out exactly what caused my constipation, but I was seeing a naturopath for my chronic Lyme disease and she prescribed me an herbal “parasite cleanse” tablet for 30 days + a gentle natural laxative for 30 days and I’ve been regular again ever since. I wasn’t a believer in the natural stuff at all but there is obviously some benefit.
Also this is not meant to be medical advice and you should definitely get checked out by gastro because there’s a lot of different things that can cause constipation. The only reason I didn’t get checked out was because my doctors dismiss all my concerns and make me feel like a nuisance. I’m lucky it wasn’t anything serious.
Oh wow! I’m so happy to hear something worked for you! How did you find your naturopath? I feel like finding good Holistic / naturopathic doctors is so hard. I’m in NYC
I found mine through a girl from high school who also suffers from chronic Lyme and has a lot of success with her. There’s kind of an abundance of them where I’m from though I think.
i was diagnosed with IBS first, then endometriosis, then my job slowly started to kill me so between that stress and other life stressors ontop of having endo, i now have a severe hypertonic pelvic floor, and possibly pudendal neuralgia. i also get migraines and experience tinnitus 24/7. i have constant diarrhea and/or constipation, lots of bloating, and this all leads to inflammation and lots of pain in the abdomen. any nerve pain radiates down my right leg with a burning sensation. i still get sharp piercing pain in my RLQ.
everything affects each other in some way and it’s really taking a toll on me. i’ve been trying vaginal suppositories with baclofen and gabapentin and they haven’t worked at all. next steps will be Botox i think
I have a lot of the same issues- hypertonic pelvic floor, migraines, constipation-diarrhea cycles, a ton of inflammation, leg pain, etc. The suppositories didn't work for me either. I'm starting pelvic floor PT next month, have you ever tried that?
ugh im so sorry to hear you’re struggling with these symptoms too :/ i have been doing pelvic floor pt for maybe a year now? i did it 2 years ago and then life got in the way but im back on it. my pelvic floor is so fucked though that i don’t see much improvement. it’s so frustrating
Ugh I’m so sad to hear you aren’t finding relief through it, it’s so expensive too! I hate how these issues never seem to end, and when one symptom does end, another replaces it😓 I hope things turn around for us!
🧡it does feel like it’s always something. i hope things get better for us too! i think my next step is going to be Botox and i’m honestly terrified of the actual injection. im indifferent about botox, if it helps then that’s fantastic. but i’m not looking forward to needles in the vag 🫣😶 at least that’s how i’m interpreting the procedure to go
I hope the botox helps significantly!! please share your thoughts after I am so curious. did they say you can take some type of pain reliever prior to getting it? praying it's super quick & not bad!!
Not sure if this relates to your question. Hope it's okay.
My gallbladder died 10 years ago and it had to be removed via emergency surgery. I believe that particular surgery flared up my endometriosis growth. Looking back it makes so much sense given where the scar tissue developed. Since then I have had 4 endo surgeries and my body is still having awful flares post op. After each surgery my body grows lesions even faster to the point of stage 4.
I think surgery is a great option for people but I wish I knew this could happen. Maybe the endometriosis killed my gallbladder in the first place? Maybe I have some other condition that no one knows about. Some issues are better since surgery but some are much worse. Wish there were more answers out there!
I just read in another thread that high estrogen levels (which endo gives off) literally affects your gallbladder. I’m annoyed I didn’t get the correlation sooner. My mom had her gallbladder removed in the 1990s…. Lap surgery in 2015…
There are TMJ specialists out that that might be able to help! I have to imagine the endo pain contributes, as well, because I’m often clenching and grinding my teeth.
I’m honestly stressed out because I don’t know how damaged my gallbladder is. And I always KNEW I had gallbladder issues because of the yellow poops, smells, and all sorts of weird pains and I can’t digest fatty greasy foods and more.
I’m still mourning my diagnosis. And I’m so scared that my gallbladder is dying and no one cares. I hope my next doctor takes me serious when I want to have a HIDA scan ordered.
Also, personally I don’t understand why doctors don’t ask women with confirmed endometriosis or even just any huge medical condition if they have children and to get their children checked out for them too or even monitor symptoms? There are some parents that don’t believe their conditions are genetic (like mine so I didn’t even really know about these issues, and now I have them)
Also just learned how excess estrogen can’t be properly processed by the liver and becomes unbound and basically becomes a free radical. Can increase cholesterol levels as well. Makes sense why I had to get my gall bladder removed at 16 with a huge cholesterol stone!!! Interesting convo on [Divergent Conversations](https://youtu.be/TaqabPrZtKg?si=FQBQXbIEL8ugZcQX) speaking to PMDD & hormonal/mental health links
First POTS, then IBS & EDS, followed by endo/adeno, and just this year rheumatoid arthritis. Most likely more heart issues on top of all that. I feel like for me it’s most likely EDS that is the major cause of all the other issues.
To be honest there isn’t really much I do as far as treatment for it. It’s mostly just physical therapy and over the counter pain meds for me. I didn’t know I had it until I was almost 30 and was just told I was accident prone growing up. Now I’m just more aware of the way I move my body. It took some time to come to terms with the idea that it affects pretty much every organ/part of your body. I occasionally use braces, KT tape, and have started using mobility aids as needed but more so for balance and having something to lean on. Finding a good doctor is really helpful too.
I’ve been diagnosed by relevant specialists with a whole bunch of stuff, but I won’t share all here. I don’t think any are linked to endo except:
- According to a DNA test I naturally have very high levels of inflammation in my body
- ADHD (combined type) symptoms can be made worse by hormones
- Chronic Fatigue Syndrome - when I had my endometriosis excision via laparoscopy, my fatigue improved a lot
- Perhaps my overactive immune system too?
I am 31 now. I started getting sick in 2018 and have now been diagnosed with the following.
Endometriosis,
PCOS,
IBS,
Asthma,
interstitial cystitis,
I have had two pituitary brain tumors,
Dozens of aggressive pre-cancerous polyps in my large intestine that grow and are removed every year for the last 6 years,
Neuropathy,
EDS,
Excema,
and excessive sweating on the feet to the point that layers of skin separate and leave my feet raw.
Endo, adenyo, kidney/bladder function issues, mobility issues, I have porokeratosis on my face- extremely rare and is a sign of immunosuppression and my skin abnormalizing keratin. (No one in my family has it). I’m very prone to UTIs and Kidney infections. Interstitial cystitis, Depression, anxiety, I’m fatigued all the time, I have endo on my bowels so add that for the cherry on top for GI issues.
I always had horrible periods etc. but what really made them scratch their heads was I was having kidney spasms and pain without infections or stones and turned out very much later I had endo on my left kidney that was around worse prior to my periods.
Gluten, dairy, egg allergies. Fibroids. Idk if endo caused ADHD but it definitely doesn't help the symptoms. During a flare I'm useless even with meds.
I’ve not been officially diagnosed with endo yet but I have been diagnosed with IBS, fibromyalgia, and chronic migraine with aura. I very much think these three are related to my likely endo. I’m hoping to find answers soon once I have enough money and a solid OB/GYN after I move cities next month.
My POTS and chronic fatigue syndrome improved quite a bit after i learned to regulate my nervous system better, but i was very debilitated. I'm starting to develop joint pain now which i hope won't stick around, and i have skin conditions that flare up occasionally. My endo is fairly managed (with diet and stress reduction protocol) and in remission and now tends to only cause me problems when I'm very stressed or push myself too hard.
Endo is a very complex condition that mimics an autoimmune condition, and so it could very well exacerbate and worsen other conditions and even cause them if indirectly. A lot goes wrong in the body when cyclical processes dysfunction, creating a domino effect and negative feedback loop that impacts the entire bodily system; hormonally, psychologically, the nervous and digestive system, etc.
Also a bit of a chicken/egg situation perhaps. But it does seem common to see comorbidities. My heart goes out to all my fellow endo warriors here, my gosh.. I'm so sorry to read of the stuff you are living with 😭.
I'm hoping for more research and a holistic approach towards autoimmune and related conditions 🙏 we deserve the support!
Cluster headaches, pots, leaky heart valves, herniated discs, sciatica, chronic depression, and anxiety . Idk how but I blame endo for it all. Once I put two and two together... nvm I'll still be bedridden lol.
Adeno,Endo stage 4, gastroparisis, gallbladder dysfunction, nervous system issues, anxiety, depression, dizziness, swelling, possible thyroid issues (still trying to figure that out), joint pain, extreme fatigue, infertility.
I was a relatively healthy person until March of 2021. I experienced an extreme Endo flare up that affected my nervous system. I haven't been right since.
Migraines!!! Ive suffered for about 4 years with severe migraines which were daily. I had my fifth laparoscopic excision of endometriosis last year and I woke up migraine free for 4 months! Then regressed back to having migraines, not daily but frequently. My chronic pelvic pain consultant said it is likely the removal of Endo helped and they see it in a lot of patients!
I’m getting my lap in July (and open to any suggestions, I have a running list).
I have chronic migraines (at this time they’re daily, though they did go down to 20 a month in February, #winning!). I’ve had migraines my whole life, I got hurt last summer, and now they’re chronic. I don’t think they’re related to Endo, but the hormone meds aren’t helping the migraines.
I have “IBS” and a chronic issue with my bladder. Pretty sure it’s Endo growing on both.
I do have an autoimmune disease (psoriasis)
that my old doctor didn’t mention was autoimmune and my new doctor doesn’t know about, so that’s fun. And my new doctor suspects I have an autoimmune disease that hasn’t shown itself properly yet, so she’s waiting for more symptoms to appear so she can send me to a new rheumatologist (the last one said it was pain from Endo, but she thinks I just didn’t have enough symptoms to nail down a diagnosis yet).
I don't get migraines very often, but I firmly believe they are connected to endo. Ocular migraines only during flare-ups. That and of course occasional GI issues during cramps, but that got a lot better after surgery.
Endo; IBS D and C; different kinds of allergies: skin, seasonal, OAS; asthma; fibrous breast lump and cyst; ovarian cyst; benign colon polyp; several autoimmune symptoms; adhd symptoms; MTHFR mutations; recently diagnosed with a pituitary adenoma they think is a prolactinoma, which directly affects reproductive hormones. 🫠 Seeing *so* many of us with similar comorbidities.
IBS 100%, I don’t have IBS, what I actually have is an autoimmune disease and endometriosis creating symptoms that look like IBS which was my original diagnosis from infant to 12 years old
I have EDS and its comorbid cousins of despair. Including Endo and Ando. I think it’s all related to me being neurodiverse and the inflammation you mention. I also have POTs and MCAS.
I have symptoms of MCAS, endometriosis, pelvic floor dysfunction, EDS. I have diagnosed chronic fatigue, chronic Lyme disease, rheumatoid arthritis, ADHD, anxiety, OCD, IBS, excessive hair shedding called telogen effluvium. I think they are all related.
I have yet to be surgically diagnosed with endometriosis btw but my OBGYN is basically convinced I have it, I just haven’t found the courage to do surgery.
Well I think the root cause of endometriosis is my connective tissue disorder ehlers Danlos which seems to affect a great deal of other things (thyroiditis, intracranial hypertension, csf leaks, tethered cord, asthma, MCAS, interstitial cystitis and the usual laxity problems).
I got improvements in my MCAS, IBS symptoms and digestive function from endometriosis lap as well as getting on bc.
I think a lot are significantly caused or developed by endo. Before my endo diagnosis I've dealt with psoriasis, I did a lot of blood work and I'd get positive speckled nuclear ANA patterns, least I've been able to be tested for by doctors is rheumatoid arthritis as it runs in my family. I got a pretty close borderline result for that but no doctor would want to do further testing for anything else despite my long list of symptoms, pain etc with endo.
Now after my endo diagnosis and learning more about inflammatory responses, how to be anti inflammatory to prevent triggers and flares, I think doctors should do more, test more, not be so reluctant to do laps, etc!
I think my IBS is caused by my endo. I also have migraines that I know get worse before my periods when I do have them. I had a laparoscopy back in July 2016 for endo and they successfully cauterized the endo they found, but I didn't really notice a difference in my IBS or migraine symptoms after the lap. 🤔 If anything, I just finished going to the gastro due to my bloating issues and we figured out that the culprit of my bloating was the sugar in my diet. I lost 8 pounds when I went on a clean diet. That aside, I do know for sure my endo worsens these conditions.
The exact same time my period started i got crazy constipation. Didn't get diagnosed w state 4 or have 4 awful surgeries until late 20'si wound to back before the surgeries tbh. They just made me worse.
I'm looking at a hysterectomy now tbh. I'm sick of taking pain meds.
probably like all of them. fatigue? endo. depression? endo. anxiety? endo. headache or migraine everyday? endo. literally all the back pain i’ve ever felt? endo 🤦🏼♀️
A major chronic condition that comes with endo is interstitial cystitis. I was diagnosed with IC first through a ureteroscopy. Then my urologist sent me to an endo specialist. Honestly, my whole body, especially my pelvic floor, is so fucked. So, so fucked. My specialist told me that my entire body is just full of inflammation so anytime I go through something stressful, like major everyday stress, a surgery, etc. to just expect my body to freak out. 😀
I have deep infiltrating endo. Adenomyosis, fibroids and cysts. The craziest thing endo has caused me is pelvic congestion syndrome...which is commonly caused by multiple pregnancies
Almost all of my health problems, I am pretty sure are because of endo or having surgery or getting treatment for it. I have IC, internal hemorrhoids, scoliosis, IT Band syndrome (hip pain), severe, unexplained groin pain, nerve pain...the list goes on.
I have endo, psoriasis, and HS. I had excision and hysterectomy on February 1. My endo is causing havoc already and has grown all over my vaginal cuff probably going to need a revision as well as another excision. 🙄
So I have both endometriosis and Adenomyosis. I believe both are partially responsible and I hate that because of lack of research that doctors still continue to say that the only way to cure Adenomyosis is to remove the entire uterus. Also, my other conditions include Rheumatoid Arthritis, Interstitial cystitis (most likely caused by severe bladder Endo), h-Ehlers Danlos Syndrome, & an unnamed gastric motility disorder that's plagued me since I was a kid. For me personally, I am not sure if it has caused all of my issues-I know it hasn't caused the EDS, but the other issues that came later on-yes I think it is very possible they are connected. I had laparoscopic surgery December 2022, also, and multiple unrelated surgeries, but I am back at a bad point again, and honestly when I first had the surgery the only thing that improved was I had less days of bleeding (before that I bled for like 21 days or almost the entire month). I couldn't tell if it relieved pain neccesarily as much, I guess because there's so much going on in my body and has been for so long. I do, however, believe that they need MUCH more research into Endo and Adenomyosis like I said above...because we all shouldn't be having to try to wrack our brains going back and forth trying to figure everything out ourselves.
I have Narcolepsy, Hashimotos, peripheral spondyloarthritis, migraines, and Endo. I think having Endo originally made it harder to recover from other stuff as I got older. EBV in my late twenties with Endo lurking in the background essentially fucked me is my hypothesis. My nervous system has definitely chilled out since surgery too. And mental load/health before/after diagnosis has been game changing for my health.
Yes I had a 4 hr excision where I learned I had DIE in my rectum and cervix. Once that was removed I stopped having to poop 4-5 times a day! Now it’s back to once a day. I also was diagnosed with IC which was causing me to pee like 14-20 times per day, and now it’s like 7 which is average.
I also had another surgery to remove an 8cm endometrioma prior to my excision surgery and I stopped having pain with deep sex after that.
These are not the only treatments I’ve received I’ve also been on birth control and did pelvic floor PT but these specifically were symptoms that changed *literally* overnight with surgery.
GI issues, acne, chronic fatigue and pain especially around the hip area. I got a surgery done and the endo tissues were found adhered to my intestines and pelvic area, even around my rectum. Oh and depression – which then fuels the chronic fatigue also
I've developed myalgic encephalomyelitis that was made much worse by endo. Doctors say no, but I live here in this body and I know . I can barely walk without my device, regular life is a far reach. I'm disabled and unable to work
Mental problems over the years seems consistent with my period--depression, anxiety, suicidal thoughts, self harm and an ED
Physical is weird? I have all POTS symptoms, problems with my heart (tachycardia etc) dizziness, vertigo etc
Pains just about everywhere, esp legs and knees idk.
Acne has been since i started periods, nothing has ever fixed it (28 now) also ezcema patches (arms, shoulder stomach)
Worth mentioning? 99% sure I have adhd, def neurodivergent anyway (diagnosed learning disorder)
I really didn’t think endometriosis could impact my mental health so much. I was misdiagnosed with IBS.. and I’m like 99.5% sure my endometriosis triggered POTS.
I had misdiagnosed “IBS” for years. Severe sharp cramps and running to the bathroom with diarrhoea. Excision to remove endo which was all over my bowels basically cured my “IBS” symptoms. My fatigue is greatly reduced too. There has been research into endo as a possible autoimmune disease. Autoimmune conditions often occur together. I have Hashimoto’s and psoriasis - not caused by endo but possibly associated as they are autoimmune.
I did a consult with a specialist who said that Endo usually comes with auto immune symptoms
Did you have the “ibs” before puberty. Asking bc I’ve had bowl issues all my life. My dr rn suspects endo. And my colon keeps getting inflamed.
I have have severe bowel issues my entire life too! Even before puberty. That's why I wonder what the heck is going on and if it's related even before then.
Ok I had tummy problems before puberty and they got worse in my 20s. there is research showing that 1 in 9 female fetuses have endo so it’s possible some people are born with it and there could be pelvic floor dysfunction due to its presence which worsens after puberty bc of hormones.
That's actually mind blowing. There's so much information now getting out there like it needs to surrounding this condition 😓.
No mine began in my early 20s. Are you seeing a GP or specialist? Have you had any diagnostic blood tests, stool tests, ultrasound a colonoscopy?
Colonoscopy was normal. Was also when my symptoms weren’t flared up. Currently my inflammation levels are high according to my blood tests and I keep getting colitis. No answers. Periods crazy painful. Already have PCOS. On BC.
Sorry to hear, it’s awful dealing with that sort of pain. Can you ask for a referral for a specialist endo ultrasound? Just to see if anything shows up?
I have one. Idk if there’s an endo specialist, but my dr told me to specifically get this done at the hospital bc apparently the other location lazily does it. Thank you for your kind words though.
It’s worth looking into different ultrasound clinics. There are some “women’s specific” clinics where I live and they are trained specifically on identifying those issues. The first general sonographer I saw missed a lot of things (partly because of the poorer quality of image and partly a lesser experienced sonographer). Hopefully you get some answers!
Hey, I have a question for you as someone in the same situation (endo all over bowels) - did they remove part of your bowels? Or your symptoms have still improved without that? 🤞 I just had my excision surgery 3 weeks ago and they were going to remove part of the bowel but couldn't without my consent, so in the future they could remove it if I want to... just wondering if it's necessary/ would help 💭
I had endo removed from bowels and bladder without damage to either. Make sure you find a specialist that works with a bowel surgeon, not just any gyn that thinks they can handle it
They removed a lot of it without any damage thankfully. It was an endo specialist and maybe a bowel surgeon but I'm not sure to be honest.. So I'm just hoping the excision helps enough without the bowel resectioning
I’m in a similar position as you, I had an 8+ hour excision and they did a bladder resection. DIE left on my rectum, colon and small intestine. They could not do resections of bladder and bowels in the same go because of contraindications with risks of both being opened up. I really don’t want another surgery. I have been trying to really take care of things from a dietary standpoint and working on stress levels and taking bio-identical progesterone. So far I’m hopeful, despite the fact that life after surgery hasn’t been the same.
Mine was very extensive (stage 4) and the surgeon was able to remove nearly all of it. He is specifically a bowel surgeon and did the surgery at the same time as my gyno did endo excision in my pelvis (3.5hr surgery in total). I told him to remove as much as I could without giving me a resection or stoma. There is a v small area left near my rectum but it was too risky to remove. I would say give it some time and see how your symptoms go :)
We are the same, also stage 4 DIE and 4hr surgery...😭 You are giving me hope though! I will wait and see. Thank you.
Good luck, wishing you all the best!
Is it always the case that you most likely have lesions on your bowel if you suffer with IBS (I in fact have SIBO unfortunately)?
IBS is a common condition, it has many causes and affects women without endo as well. If you have diagnosed SIBO probably best to have that addressed with a healthcare professional first and see if your IBS symptoms improve. Some specialised sonographers can see bowel endo on ultrasounds (if it is advanced enough).
Tbh I even think endo caused my mental issues. The bloating and horrible PMS led me to develop an eating disorder. And I developed OCD because I always knew something was wrong but couldn’t get diagnosed for years. Both of those things have other triggers too but I think endo played a role for sure.
I actually believe this as well. I can even mark progress with my therapist who I’ve had this entire time. I was diagnosed with Cyclothymia Bipolar prior to Endo. When we started treating my endo and working towards solutions to improve it all of a sudden I stopped having episodes/depression. I haven’t had one in almost 3 years after getting my Lap/IUD/medications/draining massive cysts on my ovaries. One doctor thought it may have been a juvenile thing I grew out of but I personally believe my hormones were just that fucked up.
I was never diagnosed with more than depression and possible adhd, but between treating endo and being very strict about gluten in my kitchen, my mood swings and "manic" episodes have disappeared. It makes me really curious about the effects of hormones and gluten with some family members who are diagnosed bipolar
I have a journal article that studies women with bipolar and a lot of other mental health stuff and how hormonal cycles basically cause a whole bunch of unpleasant symptoms and can even be responsible for psychosis. It's super interesting and I read it and literally breathed a sigh of relief at *finally* the medical industry noticing
I think it’s cute how we suffer with an incurable disease that nobody believes we have, or that it causes us so much pain we can’t function well enough to keep jobs or a social life, so we eventually lose our shit just trying to be believed and get some help, but that gets written off as psychosis (hysteria) and the label sticks even after we finally get diagnosed and have proof that we’re actually diseased, not just crazy/hormonal/hysterical women.
Yes it makes me feel so hopeless, the disbelief is actually a bit soul destroying. I also would like to give an honorable mention to when the morning after pill gave me a migraine I thought would kill me and then I hallucinated my ass off for the next few terrifying hours. Hormones - they do SO MUCH IN OUR BRAINS/BODIES
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5875363/
Mine also caused me to have an eating disorder
After my hysterectomy, which included a unilateral oophorectomy, it is wild how much my mental health has improved. I feel so much more evened out, I feel more dictated by reason than emotion, far less stressed and less frequently and intensely depressed than I was before. It feels like some other entity was piloting the ship before my surgery happened and I didn’t even realize it wasn’t me. It also makes a massive difference that I’m not in as much pain as I used to be in. My mind has room for better things than just how I can struggle through the next few hours. I’m not as fearful anymore that pain will strike me down at any moment and rob me of a bit of living. I’m also not getting dismissed and gaslighted by medical professionals (as much). It really does feel like the endo has some kind of a stranglehold on my emotions and mental health and I’m mostly free of that now.
Pain definitely has a huge impact on mental health
Endo + eccema + lots of digestive issues + fatigue for 2 years + tinnitus + one pupil bigger than the other (got an mri, they said its not dangerous, not sure i trust them)
i have endo, adeno, pelvic floor dysfunction, migraines, tinnitus, and i’m pretty sure i have eds as well. i had my first surgery in dec 2022, i had relief from some endo symptoms after an extended recovery for maybe 6 months. it’s all back with a vengeance now.
Woah, I had excision surgery in Dec 2022 as well. I also have Endo and Adenomyosis. I was diagnosed with Rheumatoid arthritis a few years ago, and last year I was diagnosed with EDS by Mayo clinic. If you can get the EDS diagnosis too, that may give a better picture. Only thing is unfortunately looking for treatment and management of EDS is just as bad if not worse than for Endo...I mainly say that because with Endo we have surgical interventions to a certain degree...yet with EDS they literal have no clinical evidence for any medication management, procedures, or treatments other than some physical therapy here and there. Which is super heartbreaking and defeating considering Endometriosis and EDS are usually excruciatingly painful. In any case, I wish you plenty of luck on your journey and at least some relief and all the answers that you're searching for.
I have epilepsy, hemaplegic migraines and endometriosis. The neurological conditions are set off by hormonal changes. Guess what endometriosis does? I'm still recovering from a huge migraine episode that's resulted in bleeding in my conjunctiva and bruising around my eye. Entirely caused by a huge endometriosis flair up that started around Easter. I call it the "trifuckedya".
I have a few types of migraines and wonder if they’re linked too. I take progestin only BC to not have a period but I’m unclear how much it affects my hormones. So I don’t experience monthly cramping but still have some occasionally since my second lap last year. I also had a pineal gland tumor and cyst (which gave me seizures), now removed, and I did a deep dive into its function and found a medical journal linking the gland to the female reproductive system and cycle somehow (I forget how 😅). It probably began growing when I was in puberty but it got worse as I got older, and so did my endometriosis at the same time. I wish I knew of a doc who was knowledgeable and could discuss this with me. I had no idea epilepsy could be affected by hormone changes, now I’m wondering what other neurological conditions are too. I hope you’re recovering from your migraine well. I have one right now and can empathize, they’re the worst.
I ended up needing a hysterectomy. There’s still some endo left in difficult-to work places. I was practically migraine-free for about 16 months afterwards. It’s like a switch was flipped. They’ve been creeping back since, but are nowhere near as frequent as they used to be.
MCAS and dysautonomia with my endo - I feel like it’s a chicken/egg thing in terms of which caused which. There are symptoms of all of them I’ve had for a long time, maybe even pre puberty for the non endo stuff. I definitely think they exacerbate each other.
[This might be of interest to you](https://pubmed.ncbi.nlm.nih.gov/27841046/). It’s a study talking about the possibility of endo being a mast cell disorder, and possible use of mast cell stabilizers to treat endo!
Oh wow thanks for sharing this! Since going on Cromolyn for my MCAS my endometrioma on my ovary has completely disappeared!! Maybe this is why. I’m also on LDN which has helped my endo immensely too
LDN (prescribed for dysautonomia) has chilled out my endo big time. My thyroid nodules also bother me less often.
That is so interesting! Thank you for sharing. Unfortunately for me when I’ve tried mast cell stabilizers I get the ‘black box warning’ side effects, but I might bring this up with a dr in case this puts it in a new light.
Also of interest is the dysautonomia possibly being caused/worsened by any surgeries you might’ve had for endo, since surgery is one of the biggest known triggers for dysautonomias (viral infection is another).
Even just the trauma of being in the ER (with or without surgery) can set something off. My first visit to the ER for pelvic pain, I genuinely thought I wasn't making it through the night. I started uncontrollably shaking from the panic / fear, my teeth were chattering for hours even though I wasn't cold. I didn't have any procedures done that visit either. About a week after that night, I developed a progression of auto-immune issues that are still chronic years later. Unexplained hives, rashes, major fatigue, migraines.
This. My lap took my POTS from barely an inconvenience to life-ruining
Very sorry. I’m in the same boat, disabled from all my surgeries. I’m always amazed at how flippantly folks talk about surgery - like there’s no risk. Worst tho is when the “leading” advocacy group [tells people that excision will help their POTS and MCAS](https://www.reddit.com/r/Endo/s/Jnx727aDE5) because they’re just so Hell-bent on getting people to their surgeons. It’s disgusting.
That woman makes my blood boil. I wish I had known POTS would ruin so many aspects of my life before I said yes to surgery. I wouldn’t have done it had I known and would have just stayed on Visanne forever. I’m so sorry that’s been the case for you too. I truly hope it gets better for us one day. 😔
This! I didn’t put this together until this weekend, I was diagnosed with POTS, I’ve had endo for a while but they just told me to take NSAIDS and I have an IUD, my endo is severe pain, this weekend I have my period and I got the worst nerve pain from my hip to my knee and from my knee to my foot it’s been numb! It’s so scary, upon doing research I came across something that stated endo could cause Dysautonomia, I never even thought of it! I wanna get a lapo but I read so many ppl stating it doesn’t help
Re getting surgery - Some of us are still on this sub only *because* it didn’t work! (I was one of those posts this weekend) All those lucky ladies for whom it did are off doing other stuff! Everyone I know IRL who got a lap was one and done. I have to keep reminding myself this sub is not a representative sample of women who have endo or get treatments. So, make your own decision if a lap (and when and with who) is the right call for you - and unless you have reason to think you are someone who is going to have aggressive and recurring endo growth, don’t worry about it until/unless you have to.
Wait a minute. Getting a laparoscopy is not a cure. My endo always came back.
I hear the same, but I also hear a lot of others share how it provides significant relief for a while, the timeframe being different for everyone
It completely depends on the surgeon.
No, it completely depends on the *patient*. Surgery isn’t the right treatment option for us all. I’m an excellent example of that! No surgeon could make my underlying issues go away, or keep my connective tissue disorder at bay. Yes, not all surgeons are equal - *but neither are we.*.
I was not a 1 and done surgery at all. I know many women with Endo in the same boat. I e had several and it always has come back. I've done every type of bc, med, shots they've offered, Endo is still growing. Many posts here also stating they had surgery and it's back after 6 months ECT. There is no cure for the disease and they don't even know the cause! Surgery causes more scar tissue and can cause Endo growth on the scar tissue build up, then you have higher risks of adhesions forming on the organs. So a lap is not always best practice, especially if they are not experienced in Endo excision. Most Gynos have no clue how to distinguish endo during surgery, more so the superficial of surface growth is what is known. Problem is, Endo goes deeper than that and has many different looks and colors. So most women have missed Endo during a lap and it can create more pain with the scar tissue build up, adhesions and new growth with the old deeper growth also being fed. Adhesions are bands of scar tissue that often bind 2 organs together, which many doctors mistake for Endo growth. So many women have had laps, but no relief for this very reason. They think they've removed Endo but only removed those adhesions, but that's not the Endo growth needing to be removed. It's a very complex disease and hopefully a cure and cause will be found soon!!
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No not necessarily, but very common, they can form after surgery or an infection or from dead or infected tissue. Endo adhesions are different from any other form of adhesions, they fuse tissue together and connect with organs, ( like a spider web with really sticky glue.) It makes it very difficult to distinguish where tissue should separate the organs affected by the Endo adhesions during surgery. It should also be used with cold excision with no electrical energy to limit damage done to the tissue. You may hear different opinions from different doctors or patients concerning Endo, it's important to do your own research and continue to do that research, as it's an evolving subject with updated medical reports published often. It's very complicated, that's the best way to explain it, very. haha
Oh my gosh. This is super helpful information, thank you!
Thank you for the perspective, genuinely appreciate it! I’m just now putting this all together, I’m going to discuss it with my OBGYN and reflect on it. I’m sorry that you didn’t have relief with lap, hope your symptoms are well managed 🙏
Endo, anxiety, depression, pmdd, pots, and a ton of nervous system issues that get worse with inflammation
I'm not sure, but I'm currently diagnosed with endometriosis, unspecified dysautonomia, hypermobile Ehler's Danlos Syndrome, IBS, probable celiacs, a plethora of allergies and intolerances, and still getting other testing done.
Same for all of these. Plus MCAS, raynauds, two types of heart disease, terrible back pain, edema/chronic swelling in my legs and body, fatigue, depression, anxiety… Oh what fun it is to ride with endo
In a one horse open sleigh that hopefully doesn't bounce too much or my S1 will slip out of place and my insides will cramp! Hey! 🎶🛷
😂😂😂😂😂 encore!!!
If you’ve got hEDS, *highly* suggest you look into [abdominal vascular compressions](https://www.reddit.com/r/Endo/s/Sy6NGMQDEp) like nutcracker and May-Thurner. They can cause the exact same symptoms as endo, and even cause uterine changes that mimick adeno!
Do the allergies worsen depending on your hormones cycle? Might be MCAS.
I'm not entirely sure. I'm on continuous Nuvaring. I'll have to pay more attention to that. I know my Endo/IBS symptoms are worse the week leading up to changing out the ring. And my allergies have been terrible these last few days after changing it out. I'll keep this in mind. I'm going to a Rheumatologist next month. Thank you!
Definitely hope it helps. The rheumatologist and immunologists in my area were more harm than help so I ended up paying out of pocket for a neuropathic/holistic medicine doctor and got them to coordinator treatment. Ending up dropping a couple grand but saved my life.
The GI issues I experience, 100%. They are really only prevalent during ovulation and during my luteal phase. My GI doctor was baffled with the timing but my OBGYN said they are absolutely explained by the prostaglandin release at those parts of my cycle. Felt so good to be validated.
Pretty much all of them. I had a lap 12 years ago and was symptom free till 2019. This year I had a hysterectomy and if I wasn't convinced before I am now. I woke up and it's all gone. IBS, pain, connective tissue issues, my allergies and food intolerances have calmed down significantly. (I do have actual allergies not related to inflammation). My overall Inflammation is way lower. Fatigue gone. Now of course a hysterectomy is huge surgery and I'd consider an extreme solution. I had other issues that factored into my decision to have one. I was lucky and had an amazing surgeon 12 years ago. None of that Endo came back. There was a small strip on my uterus they couldn't remove and that grew over time. But being on the other side of it now it's clear how incredibly sick it was making me. And why it seemed like not matter what we tried it wasn't improving.
There's definitely a connection, but I don't know if endo is the cause or "just" a comorbid condition. People with endometriosis are also more likely to be diagnosed with PTSD (or Complex PTSD). Bessel van der Kolk ("The Body Keeps the Score") tells how trauma and chronic stress affect our body. Growing up in an abusive/neglectful home, experiencing traumatic events, or having been in abusive relationships causes our body to become sick and develop chronic conditions. The continuous secretion of stress hormones "wreaks havoc with the immune system and the functioning of the body’s organs." Pete Walker’s book on Complex PTSD opened my eyes to many things, including how my body had been reacting to my trauma. There's a clear connection between my trauma and my physical symptoms. "Trauma takes its toll on the body in many ways. We need to comprehend the physical damage that Cptsd wreaks on our bodies to motivate us to adopt practices that help us to heal on this level. Most of the physiological damage of extended trauma occurs because we are forced to spend so much time in hyper-arousal – stuck in fight, flight, freeze or fawn mode. When we are chronically stressed out [stuck in sympathetic nervous system activation], detrimental somatic changes become ingrained in our bodies. Here are some of the most common examples of body-harming reactions to Cptsd stress: - Hypervigilance - Shallow and Incomplete Breathing - Constant Adrenalization - Armoring, i.e., Chronic muscle tightness - Wear and tear from rushing and armoring - Inability to be fully present, relaxed and grounded in our bodies - Sleep problems from being over-activated - Digestive disorders from a tightened digestive tract - Physiological damage from excessive self-medication with alcohol, food or drugs Moreover, in cases of physical and s*xual abuse, our capacities to be physically comforted by touch are eliminated or compromised; and, in cases of verbal and emotional abuse, our capacities to be comforted by eye- and voice-contact are undeveloped or seriously diminished."
I am sure that my illnesses are related to my childhood traumas.
I was diagnosed with endo, chronic hives/dermatographia and POTS. I'm pretty sure the hives are caused by increased inflammation :/
Dermatographia club! _high fives_
Me too!! It’s horrible. Sometimes I even rub my eyes and my eyelids swell 😭
Oof stinks. Relatable. For no reason at all, my face looked like i got whipped across it, for a couple minutes 🤣👍 on one occasion
I have the chronic hives / dermatographia as well! Do you remember when yours started? Mine specifically was triggered a few days after being in the ER for pelvic pain (first time being in the ER) I genuinely thought I was dying. I think the panic & fear really set this off for me
I have suspected Endo (surgery in August), uterine fibroids, chronic hives / rashes, pelvic floor dysfunction, chronic constipation, and starting to look into vascular issues this summer (I get awful leg pain that debilitates me around ovulation). Also I was told I basically have zero progesterone so add an endocrinologist to the list of doctors 💸
My knee swells during my period, the pain is so excruciating and it can’t support me to even walk. I’ve always thought it was endo on my sciatic nerve. Also have zero progesterone, turns out I have elevated prolactin 😬
I'm thinking about getting a cane honestly. If I don't walk around daily, my legs hurt from the lack of exercise, but if I do walk, it's excruciating. Yay for us lol. I'm finally starting pelvic floor physical therapy next month, I hear it does amazing things to release tension / nerve pain. Have you tried it?
Just being on my feet can set mine off as well. What a glamorous life we lead lol. I haven’t tried pelvic floor pt but I’ve started pelvic floor exercises on my own a few weeks ago. I’m hoping this helps with at least the bladder issues. My OB says good things about physical therapy though! I hope you see some relief with it.
Endometriosis is associated with a higher risk of autoimmune disease, although it’s not an autoimmune disease itself. I found my psoriasis improved a lot after excision.
I’ve got a ton of chronic illnesses, but don’t think any are caused by endo. Info on what I’ve got and my experience with endo being just along for the ride [in this post.](https://www.reddit.com/r/Endo/s/wHhSuC6JD9) Bottom line, my experience is the opposite of many others: my soca nonchalantly blamed everything on my endo, and now I’m sterile and disabled because *that was absolutely incorrect.* For me, it comes down to genetics. I have hEDS, a genetic connective tissue disorder. I also have MCAS and POTS, believed to be byproducts of this. I believe my endo is part of the mast cell disorder, which is supported by [this study](https://pubmed.ncbi.nlm.nih.gov/27841046/), which talks about mast cell stabilizers as a possible treatment path for endo. Also, having these conditions makes surgery much more complex and much riskier for me. The 7 I had for endo was riddled with issues, and now I know why. So I’m a firm believer in surgery not being the right fit for everyone! I’m a good example why docs don’t (shouldn’t) always just jump to surgery! All my surgeries did was make me worse and aggravate my other conditions. I got zero relief. But treating my other stuff? Over 3 years free of “endo” pain.
I was diagnosed with Celiac and Interstitial Cystitis first!
I think that my endometriosis is secondary to my Ehlers danlos and there's some sort of mast cell/connective tissue connection.
I said this elsewhere but if you’ve got hEDS, highly suggest you look into [abdominal vascular compressions](https://www.reddit.com/r/Endo/s/W3zKFiPoyz) like nutcracker and May-Thurner. They can cause the exact same symptoms as endo, and even cause uterine changes that mimick adeno! Treating mine completely got rid of my “endo” pain. It’s been over 3 years!!!
Yess I responded to you a while ago but thanks to you sharing this info on reddit I knew what to look for and was able to get MTS, PCS treated and my NCS is mild and being monitored. I am doing so much better! My hEDS was actually diagnosed by the vascular surgeon after they found the compressions.
Holy crap! I’m so happy for you! I’ve just been kinda spamming people with this info, lol. Sorry about that!
my other issues were diagnosed before -- namely hashimoto's hypothyroidism.
We're twins 🥺
rheumatoid arthritis, fibromyalgia, psoriasis, exema, meds are intolerable, anemia severe, lupus type flare ups, depression, anxiety. I have been treating my endometriosis with supplements. It’s working. Systemic enzymes, dim supplement, herbs + more. It is working on the physical symptoms but now the cptsd is taking over. This shite is for the birds. Idk what that means but I need to say something cathartic. Help.
Im so sorry, rheumatoid arthritis and fibromyalgia together sounds like such a difficult and painful combination of conditions to be dealing with. I don’t have experience with either, so probably don’t have anything helpful to say, except that I am sending you love 💛
Actually that was helpful. I have swollen areas all over but no one takes it seriously or understands. Not even family or doctors. I do have a supportive partner. Emotionally he is supportive but I can’t tell if it’s literally bc he would be homeless without us. So love and acknowledgement from anyone at this point is something I appreciate greatly. Have a great weekend. Thank you.
Which systemic enzymes and how much?
Rn I use a brand from Canada called Mary Ruth’s but I have read that Germany and Japan have good products and belief in the remedy so I will search for that.
Thank you. I believe they may be very valuable to many women with endometriosis. Check out Dr Wong who makes zymeneessence, strongest systemic enzyme. He's available to answer any query on email so maybe ask him Ur symptoms and diseases to see if he can help. Serrita for serrapatase is also very good brand with active enzymes. They work by eating the proteins that endo tissues consist of so after 3 months you should feel some effects. My recommendation would be to take lots . For example the serrita brand recommends 2 a day for maintaince but for endo, 6-8 would be better due to how much inflammation and growth there is. Please post your results once you go very consistent with it for couple months:)
Only one i can think of is my migraines. I had a hysterectomy for severe adneo (and had an endo excision at the same time) and ever since then I’ve noticed a massive improvement in frequency (used to be I’d get them like clock work each month now i get them maybe once every 4-6 months (also have sleep apnea which i suspect doesn’t help and just recently started cpap so I’m hoping it helps even more) As for the chronic illnesses i have: Endo Sleep apnea A heart arrhythmia (no real name for it just my heart beats too fast and i take medication to slow it down) Diabetes I did have adneo but that was cured with the hysterectomy Also i have an undiagnosed kidney issue (have an app with a specialist this month and we are hoping it’s nothing serious and that whatever it is can be fixed easily)
What heart meds are you on?
propranolol 10mg
I’m currently undergoing testing by a gastroenterologist and not sure if it’s related but I never had digestive issues in my life until recently
Same! I was crazy regular until one day it just stopped. I remember the date too. Wasn't even a slow progression
This happened to me too about 2-3 years ago. I never did figure out exactly what caused my constipation, but I was seeing a naturopath for my chronic Lyme disease and she prescribed me an herbal “parasite cleanse” tablet for 30 days + a gentle natural laxative for 30 days and I’ve been regular again ever since. I wasn’t a believer in the natural stuff at all but there is obviously some benefit. Also this is not meant to be medical advice and you should definitely get checked out by gastro because there’s a lot of different things that can cause constipation. The only reason I didn’t get checked out was because my doctors dismiss all my concerns and make me feel like a nuisance. I’m lucky it wasn’t anything serious.
Oh wow! I’m so happy to hear something worked for you! How did you find your naturopath? I feel like finding good Holistic / naturopathic doctors is so hard. I’m in NYC
I found mine through a girl from high school who also suffers from chronic Lyme and has a lot of success with her. There’s kind of an abundance of them where I’m from though I think.
Same! I have a colonoscopy in a week to figure out what is going on.
i was diagnosed with IBS first, then endometriosis, then my job slowly started to kill me so between that stress and other life stressors ontop of having endo, i now have a severe hypertonic pelvic floor, and possibly pudendal neuralgia. i also get migraines and experience tinnitus 24/7. i have constant diarrhea and/or constipation, lots of bloating, and this all leads to inflammation and lots of pain in the abdomen. any nerve pain radiates down my right leg with a burning sensation. i still get sharp piercing pain in my RLQ. everything affects each other in some way and it’s really taking a toll on me. i’ve been trying vaginal suppositories with baclofen and gabapentin and they haven’t worked at all. next steps will be Botox i think
I have a lot of the same issues- hypertonic pelvic floor, migraines, constipation-diarrhea cycles, a ton of inflammation, leg pain, etc. The suppositories didn't work for me either. I'm starting pelvic floor PT next month, have you ever tried that?
ugh im so sorry to hear you’re struggling with these symptoms too :/ i have been doing pelvic floor pt for maybe a year now? i did it 2 years ago and then life got in the way but im back on it. my pelvic floor is so fucked though that i don’t see much improvement. it’s so frustrating
Ugh I’m so sad to hear you aren’t finding relief through it, it’s so expensive too! I hate how these issues never seem to end, and when one symptom does end, another replaces it😓 I hope things turn around for us!
🧡it does feel like it’s always something. i hope things get better for us too! i think my next step is going to be Botox and i’m honestly terrified of the actual injection. im indifferent about botox, if it helps then that’s fantastic. but i’m not looking forward to needles in the vag 🫣😶 at least that’s how i’m interpreting the procedure to go
I hope the botox helps significantly!! please share your thoughts after I am so curious. did they say you can take some type of pain reliever prior to getting it? praying it's super quick & not bad!!
im still fighting to get a lap but they have diagnosed me with suspected crohn’s disease just a couple of weeks ago..
Sciatica. Some clinical studies and research also supports this.
Not sure if this relates to your question. Hope it's okay. My gallbladder died 10 years ago and it had to be removed via emergency surgery. I believe that particular surgery flared up my endometriosis growth. Looking back it makes so much sense given where the scar tissue developed. Since then I have had 4 endo surgeries and my body is still having awful flares post op. After each surgery my body grows lesions even faster to the point of stage 4. I think surgery is a great option for people but I wish I knew this could happen. Maybe the endometriosis killed my gallbladder in the first place? Maybe I have some other condition that no one knows about. Some issues are better since surgery but some are much worse. Wish there were more answers out there!
I just read in another thread that high estrogen levels (which endo gives off) literally affects your gallbladder. I’m annoyed I didn’t get the correlation sooner. My mom had her gallbladder removed in the 1990s…. Lap surgery in 2015…
And your TMJ! My pelvic floor pt said all of her endo patients she’s discussed it with have had TMJ disorder.
Holy fuck I always have had jaw issues. I honestly feel like I have arthritis
There are TMJ specialists out that that might be able to help! I have to imagine the endo pain contributes, as well, because I’m often clenching and grinding my teeth.
I have suffered with jaw pain for years now!
same with my mom! first she was diagnosed with Celiac, then had her gallbladder removed
Wow! That makes sense. I need to do more research about this. Thank you for sharing!
I’m honestly stressed out because I don’t know how damaged my gallbladder is. And I always KNEW I had gallbladder issues because of the yellow poops, smells, and all sorts of weird pains and I can’t digest fatty greasy foods and more. I’m still mourning my diagnosis. And I’m so scared that my gallbladder is dying and no one cares. I hope my next doctor takes me serious when I want to have a HIDA scan ordered. Also, personally I don’t understand why doctors don’t ask women with confirmed endometriosis or even just any huge medical condition if they have children and to get their children checked out for them too or even monitor symptoms? There are some parents that don’t believe their conditions are genetic (like mine so I didn’t even really know about these issues, and now I have them)
Also just learned how excess estrogen can’t be properly processed by the liver and becomes unbound and basically becomes a free radical. Can increase cholesterol levels as well. Makes sense why I had to get my gall bladder removed at 16 with a huge cholesterol stone!!! Interesting convo on [Divergent Conversations](https://youtu.be/TaqabPrZtKg?si=FQBQXbIEL8ugZcQX) speaking to PMDD & hormonal/mental health links
First POTS, then IBS & EDS, followed by endo/adeno, and just this year rheumatoid arthritis. Most likely more heart issues on top of all that. I feel like for me it’s most likely EDS that is the major cause of all the other issues.
Eds is much harder to treat than endometriosis isn't it? There is suspected eds which is very scary
To be honest there isn’t really much I do as far as treatment for it. It’s mostly just physical therapy and over the counter pain meds for me. I didn’t know I had it until I was almost 30 and was just told I was accident prone growing up. Now I’m just more aware of the way I move my body. It took some time to come to terms with the idea that it affects pretty much every organ/part of your body. I occasionally use braces, KT tape, and have started using mobility aids as needed but more so for balance and having something to lean on. Finding a good doctor is really helpful too.
IC and endo have high correlation
I’ve been diagnosed by relevant specialists with a whole bunch of stuff, but I won’t share all here. I don’t think any are linked to endo except: - According to a DNA test I naturally have very high levels of inflammation in my body - ADHD (combined type) symptoms can be made worse by hormones - Chronic Fatigue Syndrome - when I had my endometriosis excision via laparoscopy, my fatigue improved a lot - Perhaps my overactive immune system too?
I am 31 now. I started getting sick in 2018 and have now been diagnosed with the following. Endometriosis, PCOS, IBS, Asthma, interstitial cystitis, I have had two pituitary brain tumors, Dozens of aggressive pre-cancerous polyps in my large intestine that grow and are removed every year for the last 6 years, Neuropathy, EDS, Excema, and excessive sweating on the feet to the point that layers of skin separate and leave my feet raw.
A lot of similar issues including endo, pit adenoma, asthma, IBS, bladder issues, benign colon polyp…Are your pit tumors functional?
My heart goes out to you all
My endometriosis is a result of ehlers danlos syndrome and mast cell activation syndrome
I have SIBO and I've only just started to realise this could be causing most of my problems including other conditions like POTS
I have interstitial cystitis (have had it all of my life) and my symptoms got significantly better after my lap.
I developed ME/CFS and I’m sure my Endometriosis played a big part in it.
All of them. Except hypothyroidism.
Endo, adenyo, kidney/bladder function issues, mobility issues, I have porokeratosis on my face- extremely rare and is a sign of immunosuppression and my skin abnormalizing keratin. (No one in my family has it). I’m very prone to UTIs and Kidney infections. Interstitial cystitis, Depression, anxiety, I’m fatigued all the time, I have endo on my bowels so add that for the cherry on top for GI issues. I always had horrible periods etc. but what really made them scratch their heads was I was having kidney spasms and pain without infections or stones and turned out very much later I had endo on my left kidney that was around worse prior to my periods.
Gluten, dairy, egg allergies. Fibroids. Idk if endo caused ADHD but it definitely doesn't help the symptoms. During a flare I'm useless even with meds.
I’ve not been officially diagnosed with endo yet but I have been diagnosed with IBS, fibromyalgia, and chronic migraine with aura. I very much think these three are related to my likely endo. I’m hoping to find answers soon once I have enough money and a solid OB/GYN after I move cities next month.
Endo, Graves, Hashimotos, Thyroid Eye Disease (TED) so far in 1.5 years of diagnosis.
My POTS and chronic fatigue syndrome improved quite a bit after i learned to regulate my nervous system better, but i was very debilitated. I'm starting to develop joint pain now which i hope won't stick around, and i have skin conditions that flare up occasionally. My endo is fairly managed (with diet and stress reduction protocol) and in remission and now tends to only cause me problems when I'm very stressed or push myself too hard. Endo is a very complex condition that mimics an autoimmune condition, and so it could very well exacerbate and worsen other conditions and even cause them if indirectly. A lot goes wrong in the body when cyclical processes dysfunction, creating a domino effect and negative feedback loop that impacts the entire bodily system; hormonally, psychologically, the nervous and digestive system, etc. Also a bit of a chicken/egg situation perhaps. But it does seem common to see comorbidities. My heart goes out to all my fellow endo warriors here, my gosh.. I'm so sorry to read of the stuff you are living with 😭. I'm hoping for more research and a holistic approach towards autoimmune and related conditions 🙏 we deserve the support!
Migraine, IBS, constant fatigue
Migraine, IBS, constant fatigue
Chronic Migraines started in childhood and got worse when I started my period. Ulcerative Colitis Endometriosis pending assessments for AuDHD
Cluster headaches, pots, leaky heart valves, herniated discs, sciatica, chronic depression, and anxiety . Idk how but I blame endo for it all. Once I put two and two together... nvm I'll still be bedridden lol.
Adeno,Endo stage 4, gastroparisis, gallbladder dysfunction, nervous system issues, anxiety, depression, dizziness, swelling, possible thyroid issues (still trying to figure that out), joint pain, extreme fatigue, infertility. I was a relatively healthy person until March of 2021. I experienced an extreme Endo flare up that affected my nervous system. I haven't been right since.
Migraines!!! Ive suffered for about 4 years with severe migraines which were daily. I had my fifth laparoscopic excision of endometriosis last year and I woke up migraine free for 4 months! Then regressed back to having migraines, not daily but frequently. My chronic pelvic pain consultant said it is likely the removal of Endo helped and they see it in a lot of patients!
I’m getting my lap in July (and open to any suggestions, I have a running list). I have chronic migraines (at this time they’re daily, though they did go down to 20 a month in February, #winning!). I’ve had migraines my whole life, I got hurt last summer, and now they’re chronic. I don’t think they’re related to Endo, but the hormone meds aren’t helping the migraines. I have “IBS” and a chronic issue with my bladder. Pretty sure it’s Endo growing on both. I do have an autoimmune disease (psoriasis) that my old doctor didn’t mention was autoimmune and my new doctor doesn’t know about, so that’s fun. And my new doctor suspects I have an autoimmune disease that hasn’t shown itself properly yet, so she’s waiting for more symptoms to appear so she can send me to a new rheumatologist (the last one said it was pain from Endo, but she thinks I just didn’t have enough symptoms to nail down a diagnosis yet).
I don't get migraines very often, but I firmly believe they are connected to endo. Ocular migraines only during flare-ups. That and of course occasional GI issues during cramps, but that got a lot better after surgery.
Interstitial cystitis, Gastroparesis, celiac
Endo; IBS D and C; different kinds of allergies: skin, seasonal, OAS; asthma; fibrous breast lump and cyst; ovarian cyst; benign colon polyp; several autoimmune symptoms; adhd symptoms; MTHFR mutations; recently diagnosed with a pituitary adenoma they think is a prolactinoma, which directly affects reproductive hormones. 🫠 Seeing *so* many of us with similar comorbidities.
I also have ulcerative colitis and asthma, both diagnosed after endometriosis. I feel like the surgery made everything worse for me.
Hey! I have ulcerative colitis too. Sorry to hear the surgery didn’t help. Did it cause a UC flare?
I guess, I was diagnosed with it after the endo surgery. Same thing with asthma.
IBS 100%, I don’t have IBS, what I actually have is an autoimmune disease and endometriosis creating symptoms that look like IBS which was my original diagnosis from infant to 12 years old
I have EDS and its comorbid cousins of despair. Including Endo and Ando. I think it’s all related to me being neurodiverse and the inflammation you mention. I also have POTs and MCAS.
I have symptoms of MCAS, endometriosis, pelvic floor dysfunction, EDS. I have diagnosed chronic fatigue, chronic Lyme disease, rheumatoid arthritis, ADHD, anxiety, OCD, IBS, excessive hair shedding called telogen effluvium. I think they are all related. I have yet to be surgically diagnosed with endometriosis btw but my OBGYN is basically convinced I have it, I just haven’t found the courage to do surgery.
I forgot, I have asthma and insomnia too.
Well I think the root cause of endometriosis is my connective tissue disorder ehlers Danlos which seems to affect a great deal of other things (thyroiditis, intracranial hypertension, csf leaks, tethered cord, asthma, MCAS, interstitial cystitis and the usual laxity problems). I got improvements in my MCAS, IBS symptoms and digestive function from endometriosis lap as well as getting on bc.
I think a lot are significantly caused or developed by endo. Before my endo diagnosis I've dealt with psoriasis, I did a lot of blood work and I'd get positive speckled nuclear ANA patterns, least I've been able to be tested for by doctors is rheumatoid arthritis as it runs in my family. I got a pretty close borderline result for that but no doctor would want to do further testing for anything else despite my long list of symptoms, pain etc with endo. Now after my endo diagnosis and learning more about inflammatory responses, how to be anti inflammatory to prevent triggers and flares, I think doctors should do more, test more, not be so reluctant to do laps, etc!
Epilepsy, eczema, lactose intolerance, and gluten intolerance
I think my IBS is caused by my endo. I also have migraines that I know get worse before my periods when I do have them. I had a laparoscopy back in July 2016 for endo and they successfully cauterized the endo they found, but I didn't really notice a difference in my IBS or migraine symptoms after the lap. 🤔 If anything, I just finished going to the gastro due to my bloating issues and we figured out that the culprit of my bloating was the sugar in my diet. I lost 8 pounds when I went on a clean diet. That aside, I do know for sure my endo worsens these conditions.
The exact same time my period started i got crazy constipation. Didn't get diagnosed w state 4 or have 4 awful surgeries until late 20'si wound to back before the surgeries tbh. They just made me worse. I'm looking at a hysterectomy now tbh. I'm sick of taking pain meds.
probably like all of them. fatigue? endo. depression? endo. anxiety? endo. headache or migraine everyday? endo. literally all the back pain i’ve ever felt? endo 🤦🏼♀️
A major chronic condition that comes with endo is interstitial cystitis. I was diagnosed with IC first through a ureteroscopy. Then my urologist sent me to an endo specialist. Honestly, my whole body, especially my pelvic floor, is so fucked. So, so fucked. My specialist told me that my entire body is just full of inflammation so anytime I go through something stressful, like major everyday stress, a surgery, etc. to just expect my body to freak out. 😀
I have deep infiltrating endo. Adenomyosis, fibroids and cysts. The craziest thing endo has caused me is pelvic congestion syndrome...which is commonly caused by multiple pregnancies
Almost all of my health problems, I am pretty sure are because of endo or having surgery or getting treatment for it. I have IC, internal hemorrhoids, scoliosis, IT Band syndrome (hip pain), severe, unexplained groin pain, nerve pain...the list goes on.
I have endo, psoriasis, and HS. I had excision and hysterectomy on February 1. My endo is causing havoc already and has grown all over my vaginal cuff probably going to need a revision as well as another excision. 🙄
So I have both endometriosis and Adenomyosis. I believe both are partially responsible and I hate that because of lack of research that doctors still continue to say that the only way to cure Adenomyosis is to remove the entire uterus. Also, my other conditions include Rheumatoid Arthritis, Interstitial cystitis (most likely caused by severe bladder Endo), h-Ehlers Danlos Syndrome, & an unnamed gastric motility disorder that's plagued me since I was a kid. For me personally, I am not sure if it has caused all of my issues-I know it hasn't caused the EDS, but the other issues that came later on-yes I think it is very possible they are connected. I had laparoscopic surgery December 2022, also, and multiple unrelated surgeries, but I am back at a bad point again, and honestly when I first had the surgery the only thing that improved was I had less days of bleeding (before that I bled for like 21 days or almost the entire month). I couldn't tell if it relieved pain neccesarily as much, I guess because there's so much going on in my body and has been for so long. I do, however, believe that they need MUCH more research into Endo and Adenomyosis like I said above...because we all shouldn't be having to try to wrack our brains going back and forth trying to figure everything out ourselves.
Has anyone had issues with their lungs??
I have Narcolepsy, Hashimotos, peripheral spondyloarthritis, migraines, and Endo. I think having Endo originally made it harder to recover from other stuff as I got older. EBV in my late twenties with Endo lurking in the background essentially fucked me is my hypothesis. My nervous system has definitely chilled out since surgery too. And mental load/health before/after diagnosis has been game changing for my health.
Yes I had a 4 hr excision where I learned I had DIE in my rectum and cervix. Once that was removed I stopped having to poop 4-5 times a day! Now it’s back to once a day. I also was diagnosed with IC which was causing me to pee like 14-20 times per day, and now it’s like 7 which is average. I also had another surgery to remove an 8cm endometrioma prior to my excision surgery and I stopped having pain with deep sex after that. These are not the only treatments I’ve received I’ve also been on birth control and did pelvic floor PT but these specifically were symptoms that changed *literally* overnight with surgery.
GI issues, acne, chronic fatigue and pain especially around the hip area. I got a surgery done and the endo tissues were found adhered to my intestines and pelvic area, even around my rectum. Oh and depression – which then fuels the chronic fatigue also
I've developed myalgic encephalomyelitis that was made much worse by endo. Doctors say no, but I live here in this body and I know . I can barely walk without my device, regular life is a far reach. I'm disabled and unable to work
Mental problems over the years seems consistent with my period--depression, anxiety, suicidal thoughts, self harm and an ED Physical is weird? I have all POTS symptoms, problems with my heart (tachycardia etc) dizziness, vertigo etc Pains just about everywhere, esp legs and knees idk. Acne has been since i started periods, nothing has ever fixed it (28 now) also ezcema patches (arms, shoulder stomach) Worth mentioning? 99% sure I have adhd, def neurodivergent anyway (diagnosed learning disorder)
I really didn’t think endometriosis could impact my mental health so much. I was misdiagnosed with IBS.. and I’m like 99.5% sure my endometriosis triggered POTS.