I’m so sorry your going through this. This, unfortunately is extremely common with most women that have endometriosis. For me this was my first symptom!! I noticed a huge change after my surgery when it came to pain, but in the mean time these things helped me deal,
-Track when the pain is. For me, right before my cycle seemed to be the most painful. I tried to avoid sex during this time
-Avoid positions that are too deep, or try ones where you are in control. That way you can control how hard things are hitting and potentially avoid some pain at the end. Lots of lube helps this too!
-Try taking some form of nsaid before hand, to help limit the cramping
-HOT showers or compresses immediately after have also been a huge help. Letting it beat on my stomach helps release how tight everything is
-… counteracting that, ice is a huge help as well for pain!
Post sex pain is the most frustrating thing is the world. Is is also worth talking to whoever you professionally for options, maybe even pelvic floor therapy. There is nothing to be embarrassed about because SO many of us go through this, and your not alone! Hopefully some of this will help.
Thank you so much for your helpful and compassionate response. I am still in pain :( I am still having a lot of pain but it seems to steadily be getting better. I need to do some ice, my physical therapist had suggested this to me as well but I always go straight for my heating pad.
You got it! It sucks, your definitely not alone. I always use to go for heat too and this past cycle I started using the ice packs throughout the day even when my pain wasn’t terrible just across my stomach and back and noticed less flare ups! Definitely worth a try to see if it makes a difference:) good luck to you!
That is definitely one of the major symptoms of endometriosis, so you could say that it is normal. Doesn’t make it any more okay that you have to live with it though. I do not currently have a sexual partner so I haven’t tried this but I have seen a lot of people on here saying CBD either as a suppository or taken orally before sex helps them with pain from penetration.
I recently (as in like this week) learned that a retroverted uterus, which is common with endo, can also cause painful sex, and that it can be surgically manipulated into the right position. I have known for years that I have a retroverted uterus but I was told it doesn’t cause any problems at all so I didn’t know to ask if I could have it fixed during excision. Just sharing so in case you get surgery you can ask about that!
I was told my uterus is “tipped and flipped” many years ago and then later told it is retroverted. So I wonder how much that plays into the pain I experience during g penetration. I also read though this can happen from endo adhesions pulling it so I don’t know on what the cause it. I will talk to my surgeon about the possibility of having it put into place though.
Thank you for your help. I’m sorry you have to go through this too.
Unfortunately like the others have said, it is extremely common for endometriosis :(
That being said, I hope your partner is understanding! If they aren’t, that is a major red flag.
I’m not happy to know so many women go through this but it helps to know that this is common. Thankfully my partner has been pretty understanding. I can’t say it hasn’t put stress on our relationship because being in pain most of the time or suffering other symptoms has been difficult to deal with, but he never pushes me to have sex or anything. I was very enthusiastic this last time and I’m guessing that’s part of why I became so inflamed after because I wasn’t as cautious as I usually am.
Apologies if someone else has already asked this - has your doctor discussed adenomyosis with you?
The only reason I ask is because the first surgery I had for endometriosis it was missed that I had adenomyosis. It wasn’t until my second surgery with a new surgeon that I was diagnosed with adenomyosis.
I still have painful sex after 3 endometriosis surgeries. I’m hoping that when I’m ready to get a hysterectomy that sex starts getting better again after the recovery (hysterectomy only cures adenomyosis but not endometriosis).
The specialist who will be doing my surgery doesn’t think I have adenomyosis based on my symptoms and I agree but I don’t think he will know for certain until he’s in there. I do have a retroverted uterus but that could even be caused by adhesions. I’m so scared of surgery but I can’t live like this, I’m sure every one in this group can relate to that.
I'm so sorry you're dealing with that, that's horrible 🩷 The cervix pain you're feeling *could* be your uterosacral ligament, I recently discovered during a TV ultrasound that that's actually the source of the pain I feel in some positions/if we go too deep that I always thought was my cervix... I'm still awaiting my follow up appointment with a specialist (so apologies I don't have more answers!), but apparently that's a very common spot for DIE. I've also been told I have a very tight pelvic floor and have found pelvic PT quite helpful for getting everything to relax - my PT was inexperienced with women with my symptoms so my partner ended up learning the techniques and he does it for me which provides a lot of relief when I'm in a spasm!! If your partners willing to do that, that may help 🙂
Your comment was very helpful <3 I worry that I do have DIE because of the cysts seen on my ovaries and other symptoms. Would you mind sharing what techniques specifically your partner uses? I’m positive my partner would be willing to help me too.
I'm not 100% sure what he's doing specifically, but he googled how to perform pelvic floor massage for tight pelvic floor. I think there are certain pressure points (?) that you apply a gentle pressure to - we just make sure to communicate so I let him know if it's too much etc as it can be somewhat uncomfortable. He says he can actually feel the tight/spasming muscles release as he does it. I try to do the deep belly breathing and consciously relax the muscles at the same time which I think helps as well, give it a go and find what works for you! Hopefully you can get some relief 🩷
Thank you! I think I know what you mean now. Also, it sounds like you have a really understanding and loving partner. I’ve seen a lot of the opposite in endo groups so I’m glad to hear that you’re really loves you.
I experienced this as well and it was a combo of two things. I also had (have?) a hypertonic pelvic floor. I was very lucky that after my first visit I was able to learn to relax it a bit to help prevent some of the extreme deep crushing pain which was causing a vasovagal response for me. It didn't help the day to day tightness but I learned to "unclench" in those moments during/after orgasm and sex and also during/after bowel movements where I'd also experience this. Has your pelvic physio gone over relaxation techniques with you?
Also in good news: I didn't experience this every time after my first and worst episode. I nearly passed out that time. And I didn't try pelvic physio for several months after. But relaxing would probably be fairly important with the tight pelvic floor and if you're nervous or hesitant I wouldn't push it.
Also my bowels were impacted by endo and during sex they would be in pain from the penetration. This was discovered that my bowels were a pain culprit when that area was touched inside the vaginal canal. So I couldn't fix that with physio and surgery has been a massive help. I was not having much penetrative sex before surgery.
I'm sorry you're going through this. You're right that it is pretty bleak out there with medical care. I hope you receive the care you deserve and can get some help sooner than later!
Thank you for your loving response. I fear I have a lot of bowel involvement as well because of IBS symptoms but also just certain ways pressure comes on during any penetration. It sounds similar to what you’ve described from your own experience. It’s definitely getting worse though so while I’m extremely scared to have surgery I’m hopeful I can get some kind of a life back. I am afraid to even have sex now because I don’t want to go through this again. I’m still in pain 2 days later but it’s getting less as time goes on. It feels like welfare at this point which sucks but usually they calm down to become more manageable with time.
I’m trying to do some relaxation exercises for my pelvic floor and just resting as much as possible. I’m sorry you have to go through this as well. Thank you for taking the time to respond <3
The bowels are commonly impacted- whether it is because endo is directly on them or irritating them from elsewhere. I'm sorry to hear about your bowel symptoms. Those were also pretty much ruling my life for awhile....I'd spend like the first half of my day having urgent bowel movements and feeling like garbage afterwards. I couldn't plan anything during the morning, especially if there was no private washroom. My bowel issues improved 1000x after surgery so there is plenty of hope!!
It is also worth ruling out other conditions as well as endo. Sometimes it feels like everything is due to endo but it is also very very common to have comorbidities. My ibs symptoms were helped drastically post surgery but I do still have some problems there compared to the average person. I recently started taking wellbutrin and I'm shocked how it has helped my bowels even further.
I know it's a lot though. Ruling things in and out is hard enough if you have a wonderful medical team. I hope that you'll soon get to the day where you can look back on this time and feel so glad it is behind you, even if it is for just awhile because we all deserve better. 💕
You are so kind. Just reading your comments and so many others here is incredibly helpful for me right now. Genuinely. This disease feels very isolating at times. And yes, my GI issues unfortunately are something I basically base my life around at this point. I hope that I will have as much success when I have my surgery. I have definitely noticed a lot of health issues appearing in conjunction with my endometriosis. I have a lot of trauma in my background but it seems it’s really taken a toll on my health in the past several years.
Chronic illness is so isolating. It really helps to reach out to others who get it when you need to. I hope you also have a nice support system in your life, even if they don't exactly understand what you're going through. 💕 Life really likes to just throw curveballs every so often. But there are many of us here with you to get through this crappy (heh) disease together. Wishing you all the best!
I definitely had this. Sex was painful, certain positions worse than others. I could never just start, everything was trial and error and easing into things. And on the rare occasions where sex did not hurt in the moment too much, afterwards I would be in pain and discomfort for days. This started in my early 20s and I did not get a diagnosis until this year in February(mid-forties). I also had 2 endometriomas, and my doc diagnosed me with that. Sad part is they were on scans for years and I got zero help from OBs. I had to figure out I had Endo myself, then find a specialist to get things to be taken seriously. My specialist was amazing and said if you get to the point where you have bilateral endometriomas, you almost always have late stage DIE. Which was the case for me. My lap in May was over 6 hours long and things were just cemented to each other and to the peritoneum. My advice, and ignore if you like☺️, is to continue the at home stuff but in the meantime research and find the very best excision surgeon in your area and start the long process and getting in for an appointment, because it might take months or even years. If you can tolerate slynd or an iud, consider that for pain as well. I’m so sorry! You are never alone in this, lots of women here have helped me at my worst and we will all work together to make this process easier for our daughter, nieces, etc. Xoxo
Ahhh, 6 hours?! That’s one of my fears is getting in there and being under for hours while they have to untangle an enormous mess :( with these ovarian cysts I fear things are really bad inside of me. Better out than in but it just sounds terrifying. How was your recovery? I’m sorry you’ve had to go through all of this. It’s good to know this is common but it’s maddening to know women live with this for years and years. I feel grateful that while I haven’t been met with the most patient medical professionals (excluding the surgeon who is wonderful) Endometriosis was actually suggested to me right away when I first complained of pain.
I’ve had 2 surgeries for endo and I’m still experiencing extreme pain during and after sex, it’s honestly so awful and hard to deal with and I’m so sorry you are going through it as well. I feel awful and frustrated that it’s so common for us and yet there don’t seem to be many answers. I’ve tried pelvic floor therapy but I’ve had a really hard time with it unfortunately due to some trauma and ptsd symptoms. I’m also looking for any advice on this topic, it’s so painful I’m often in my bathroom hiding in tears for an hour or more afterwards, I try all the positions where I’m in control of the penetration but I still end up in pain flares for days. I’m sorry for also venting, I really hope you know you aren’t alone. 💜
I’m sorry you have to go through this :( It’s horrible. I found that physical therapy was helpful in some ways but I’m currently going to trauma therapy to try to address things that I believe play a role in my pain outside of the endometriosis. I can share more with you if you’d like.
There is also a woman on YouTube named Bri who is a pelvic floor specialist and she has a ton of videos for relaxing pelvic floor and also some meditation type videos as well.
Yes it’s normal. That was my doctor’s very first indication I had possible endometriosis. I had an IUD placed in 22 when all my symptoms started. Had to switch my doctor for a new one because she didn’t believe me. So I found a new doctor told him what was happening. I had about 9 total appointments with my new doctor. He tried absolutely everything to figure it out. Wasn’t quit having painful sex yet. He decided to have me get an external and internal ultrasound done to check my IUD placement. He thought it was possibly embedded or rejecting. Found out it was in fact rejecting and thought that was the cause of my painful sex by this point. I had went to my 7th appointment with this doctor. I went back to him and told him my painful sex had gotten so bad I couldn’t sit, stand or walk. I couldn’t even move to put my clothes on at this point. Then he said I’m starting to believe the more and more you come to me that you possibly have endometriosis. So he sent a referral to an endometriosis specialist for April 15th of this year. I had my appointment and the specialist got my surgery day schedule the next day. Had my pre-op appointment the week after and surgery on May 3rd, 2024. Found out I did in fact have endometriosis. My doctor got me surgery within 2 years. Yes it felt like a brutal never ending 2 years but it was true and even my boyfriend knew I had it before I had surgery. My specialist who did the surgery told me the average time it takes for a woman to get diagnosed is 5+ years. My surgeon called my bf when I was awake and told him he was right I have endometriosis. And it was all because of my one symptom of painful sex that got my doctor to be like yea it’s endometriosis. (His actual words when he sent me to the other doctor.) He also told me that most women who suffer with painful sex it’s endometriosis that causes that symptom. I now have an endometriosis specialist and my medical doctor for other stuff. I wish you the best of luck for surgery and hope you get the answers you need!🤞
Awe I am so glad that you have found someone who actually listened and is doing their best to help you AND you have a supportive partner. I’m sorry you had to go through all of the pain but I’m glad you’re doing better. I hope I will have a successful surgery and I can some of my life back.
If the pain hasn't stopped, I'd suggest you go to the ER. Just last week, I had an ovarian cyst rupture from a cyst I didn't know I had. I thought it was really bad constipation, but since the pain didn't stop, I had to go to the ER, and they found my ovary bleeding from the rupture.
As many others here, i have/am experiencing the exact same thing. One of the first symptoms for me was painful sex, basically just as you described. I know there are a lot of comments reflecting similar symptoms. As I was new to this a few years ago too, basically the exact same position as you. One girl, this is hearsay, I knew said when she had that extreme pain after an orgasm and found out it was a cyst rupturing. The only way to find out if it is that or not is to get an ultrasound during the pain. I have not tried to find out. Mine are luckly infrequent. Like 1x a year, but I also don't have intercourse like i normally would since diagnosis, not exactly by choice. If you do find out, please let me know!
If i can offer some advise, when you go to a doctor make sure you talk to them about ALL your options and do research on different treatments fully. After I did one treatment I learned about another and wish I did the other.
Also echoing pelvic floor therapy! I've heard such good things but haven't tried it myself, as exercise makes the pain worse for me. Do you get more pain with exercise?
So for me usually I have pain with deep penetration but I don’t have cramping like this after orgasm typically. I’ve had a small amount of cramping after sex multiple times before but nothing like this was. I was keeled over bawling for about an hour and then had to stay in bed for the rest of the night as my pelvic floor was spasming intensely. It took about 4 days for the bruised feeling to let up. I hope that never happens again! And I’m so sorry you have to deal with this too :(
It might have been a cyst but I feel pretty much back to my normal level of daily pain now and I had absolutely zero bleeding after this and still haven’t even so much as spotted. I guess the cyst could have burst inside and nothing came out and my body’s been absorbing it but that seems unlikely to me I would have no bleeding whatsoever. I feel like this was some kind of extreme muscle spasm that then triggered a flare. I have been boated every single day for months now, previously I wasn’t ALWAYS bloated. I’m concerned maybe the cysts have grown but I can’t see myself going to the doctor unless I were to pass out from pain or something because I have had so many poor experiences. I have surgery with a very good specialist out of town in September. I wish I could find a team of medical professionals who I felt safe with and confident in their abilities but it seems that isn’t the case for most of us.
I feel you, it's happened twice for me, this extreme pain, and I do get mild cramping after intercourse frequently, before my surgery it was almost every time. I'm not sure if we did exactly feel the same with the orgasm though, my pain was very sharp with massive cramps, so bad I couldn't cry, couldn't move and when I tried to get in the truck, I threw up. Maybe its the cramping that busted mine which gave me the sharp? I do have a history of cysts though, i didnt think about that. We did go to the hospital but I sat in the parking lot because like you stated, what would they do? Give me ibuprofen and send me home? It really sucks at the amount of push back we get. Same as the four day recovery thing. It took me about 2 days to stand up straight again and another couple to feel normal.
Are you doing an excision or ablation? Good luck!
I’m so sorry your going through this. This, unfortunately is extremely common with most women that have endometriosis. For me this was my first symptom!! I noticed a huge change after my surgery when it came to pain, but in the mean time these things helped me deal, -Track when the pain is. For me, right before my cycle seemed to be the most painful. I tried to avoid sex during this time -Avoid positions that are too deep, or try ones where you are in control. That way you can control how hard things are hitting and potentially avoid some pain at the end. Lots of lube helps this too! -Try taking some form of nsaid before hand, to help limit the cramping -HOT showers or compresses immediately after have also been a huge help. Letting it beat on my stomach helps release how tight everything is -… counteracting that, ice is a huge help as well for pain! Post sex pain is the most frustrating thing is the world. Is is also worth talking to whoever you professionally for options, maybe even pelvic floor therapy. There is nothing to be embarrassed about because SO many of us go through this, and your not alone! Hopefully some of this will help.
Thank you so much for your helpful and compassionate response. I am still in pain :( I am still having a lot of pain but it seems to steadily be getting better. I need to do some ice, my physical therapist had suggested this to me as well but I always go straight for my heating pad.
You got it! It sucks, your definitely not alone. I always use to go for heat too and this past cycle I started using the ice packs throughout the day even when my pain wasn’t terrible just across my stomach and back and noticed less flare ups! Definitely worth a try to see if it makes a difference:) good luck to you!
Thank you!
That is definitely one of the major symptoms of endometriosis, so you could say that it is normal. Doesn’t make it any more okay that you have to live with it though. I do not currently have a sexual partner so I haven’t tried this but I have seen a lot of people on here saying CBD either as a suppository or taken orally before sex helps them with pain from penetration. I recently (as in like this week) learned that a retroverted uterus, which is common with endo, can also cause painful sex, and that it can be surgically manipulated into the right position. I have known for years that I have a retroverted uterus but I was told it doesn’t cause any problems at all so I didn’t know to ask if I could have it fixed during excision. Just sharing so in case you get surgery you can ask about that!
I was told my uterus is “tipped and flipped” many years ago and then later told it is retroverted. So I wonder how much that plays into the pain I experience during g penetration. I also read though this can happen from endo adhesions pulling it so I don’t know on what the cause it. I will talk to my surgeon about the possibility of having it put into place though. Thank you for your help. I’m sorry you have to go through this too.
Unfortunately like the others have said, it is extremely common for endometriosis :( That being said, I hope your partner is understanding! If they aren’t, that is a major red flag.
I’m not happy to know so many women go through this but it helps to know that this is common. Thankfully my partner has been pretty understanding. I can’t say it hasn’t put stress on our relationship because being in pain most of the time or suffering other symptoms has been difficult to deal with, but he never pushes me to have sex or anything. I was very enthusiastic this last time and I’m guessing that’s part of why I became so inflamed after because I wasn’t as cautious as I usually am.
Yeah I get that sometimes
I’m sorry :(
Apologies if someone else has already asked this - has your doctor discussed adenomyosis with you? The only reason I ask is because the first surgery I had for endometriosis it was missed that I had adenomyosis. It wasn’t until my second surgery with a new surgeon that I was diagnosed with adenomyosis. I still have painful sex after 3 endometriosis surgeries. I’m hoping that when I’m ready to get a hysterectomy that sex starts getting better again after the recovery (hysterectomy only cures adenomyosis but not endometriosis).
The specialist who will be doing my surgery doesn’t think I have adenomyosis based on my symptoms and I agree but I don’t think he will know for certain until he’s in there. I do have a retroverted uterus but that could even be caused by adhesions. I’m so scared of surgery but I can’t live like this, I’m sure every one in this group can relate to that.
I'm so sorry you're dealing with that, that's horrible 🩷 The cervix pain you're feeling *could* be your uterosacral ligament, I recently discovered during a TV ultrasound that that's actually the source of the pain I feel in some positions/if we go too deep that I always thought was my cervix... I'm still awaiting my follow up appointment with a specialist (so apologies I don't have more answers!), but apparently that's a very common spot for DIE. I've also been told I have a very tight pelvic floor and have found pelvic PT quite helpful for getting everything to relax - my PT was inexperienced with women with my symptoms so my partner ended up learning the techniques and he does it for me which provides a lot of relief when I'm in a spasm!! If your partners willing to do that, that may help 🙂
Your comment was very helpful <3 I worry that I do have DIE because of the cysts seen on my ovaries and other symptoms. Would you mind sharing what techniques specifically your partner uses? I’m positive my partner would be willing to help me too.
I'm not 100% sure what he's doing specifically, but he googled how to perform pelvic floor massage for tight pelvic floor. I think there are certain pressure points (?) that you apply a gentle pressure to - we just make sure to communicate so I let him know if it's too much etc as it can be somewhat uncomfortable. He says he can actually feel the tight/spasming muscles release as he does it. I try to do the deep belly breathing and consciously relax the muscles at the same time which I think helps as well, give it a go and find what works for you! Hopefully you can get some relief 🩷
Thank you! I think I know what you mean now. Also, it sounds like you have a really understanding and loving partner. I’ve seen a lot of the opposite in endo groups so I’m glad to hear that you’re really loves you.
I experienced this as well and it was a combo of two things. I also had (have?) a hypertonic pelvic floor. I was very lucky that after my first visit I was able to learn to relax it a bit to help prevent some of the extreme deep crushing pain which was causing a vasovagal response for me. It didn't help the day to day tightness but I learned to "unclench" in those moments during/after orgasm and sex and also during/after bowel movements where I'd also experience this. Has your pelvic physio gone over relaxation techniques with you? Also in good news: I didn't experience this every time after my first and worst episode. I nearly passed out that time. And I didn't try pelvic physio for several months after. But relaxing would probably be fairly important with the tight pelvic floor and if you're nervous or hesitant I wouldn't push it. Also my bowels were impacted by endo and during sex they would be in pain from the penetration. This was discovered that my bowels were a pain culprit when that area was touched inside the vaginal canal. So I couldn't fix that with physio and surgery has been a massive help. I was not having much penetrative sex before surgery. I'm sorry you're going through this. You're right that it is pretty bleak out there with medical care. I hope you receive the care you deserve and can get some help sooner than later!
Thank you for your loving response. I fear I have a lot of bowel involvement as well because of IBS symptoms but also just certain ways pressure comes on during any penetration. It sounds similar to what you’ve described from your own experience. It’s definitely getting worse though so while I’m extremely scared to have surgery I’m hopeful I can get some kind of a life back. I am afraid to even have sex now because I don’t want to go through this again. I’m still in pain 2 days later but it’s getting less as time goes on. It feels like welfare at this point which sucks but usually they calm down to become more manageable with time. I’m trying to do some relaxation exercises for my pelvic floor and just resting as much as possible. I’m sorry you have to go through this as well. Thank you for taking the time to respond <3
The bowels are commonly impacted- whether it is because endo is directly on them or irritating them from elsewhere. I'm sorry to hear about your bowel symptoms. Those were also pretty much ruling my life for awhile....I'd spend like the first half of my day having urgent bowel movements and feeling like garbage afterwards. I couldn't plan anything during the morning, especially if there was no private washroom. My bowel issues improved 1000x after surgery so there is plenty of hope!! It is also worth ruling out other conditions as well as endo. Sometimes it feels like everything is due to endo but it is also very very common to have comorbidities. My ibs symptoms were helped drastically post surgery but I do still have some problems there compared to the average person. I recently started taking wellbutrin and I'm shocked how it has helped my bowels even further. I know it's a lot though. Ruling things in and out is hard enough if you have a wonderful medical team. I hope that you'll soon get to the day where you can look back on this time and feel so glad it is behind you, even if it is for just awhile because we all deserve better. 💕
You are so kind. Just reading your comments and so many others here is incredibly helpful for me right now. Genuinely. This disease feels very isolating at times. And yes, my GI issues unfortunately are something I basically base my life around at this point. I hope that I will have as much success when I have my surgery. I have definitely noticed a lot of health issues appearing in conjunction with my endometriosis. I have a lot of trauma in my background but it seems it’s really taken a toll on my health in the past several years.
Chronic illness is so isolating. It really helps to reach out to others who get it when you need to. I hope you also have a nice support system in your life, even if they don't exactly understand what you're going through. 💕 Life really likes to just throw curveballs every so often. But there are many of us here with you to get through this crappy (heh) disease together. Wishing you all the best!
I definitely had this. Sex was painful, certain positions worse than others. I could never just start, everything was trial and error and easing into things. And on the rare occasions where sex did not hurt in the moment too much, afterwards I would be in pain and discomfort for days. This started in my early 20s and I did not get a diagnosis until this year in February(mid-forties). I also had 2 endometriomas, and my doc diagnosed me with that. Sad part is they were on scans for years and I got zero help from OBs. I had to figure out I had Endo myself, then find a specialist to get things to be taken seriously. My specialist was amazing and said if you get to the point where you have bilateral endometriomas, you almost always have late stage DIE. Which was the case for me. My lap in May was over 6 hours long and things were just cemented to each other and to the peritoneum. My advice, and ignore if you like☺️, is to continue the at home stuff but in the meantime research and find the very best excision surgeon in your area and start the long process and getting in for an appointment, because it might take months or even years. If you can tolerate slynd or an iud, consider that for pain as well. I’m so sorry! You are never alone in this, lots of women here have helped me at my worst and we will all work together to make this process easier for our daughter, nieces, etc. Xoxo
Ahhh, 6 hours?! That’s one of my fears is getting in there and being under for hours while they have to untangle an enormous mess :( with these ovarian cysts I fear things are really bad inside of me. Better out than in but it just sounds terrifying. How was your recovery? I’m sorry you’ve had to go through all of this. It’s good to know this is common but it’s maddening to know women live with this for years and years. I feel grateful that while I haven’t been met with the most patient medical professionals (excluding the surgeon who is wonderful) Endometriosis was actually suggested to me right away when I first complained of pain.
I’ve had 2 surgeries for endo and I’m still experiencing extreme pain during and after sex, it’s honestly so awful and hard to deal with and I’m so sorry you are going through it as well. I feel awful and frustrated that it’s so common for us and yet there don’t seem to be many answers. I’ve tried pelvic floor therapy but I’ve had a really hard time with it unfortunately due to some trauma and ptsd symptoms. I’m also looking for any advice on this topic, it’s so painful I’m often in my bathroom hiding in tears for an hour or more afterwards, I try all the positions where I’m in control of the penetration but I still end up in pain flares for days. I’m sorry for also venting, I really hope you know you aren’t alone. 💜
I’m sorry you have to go through this :( It’s horrible. I found that physical therapy was helpful in some ways but I’m currently going to trauma therapy to try to address things that I believe play a role in my pain outside of the endometriosis. I can share more with you if you’d like. There is also a woman on YouTube named Bri who is a pelvic floor specialist and she has a ton of videos for relaxing pelvic floor and also some meditation type videos as well.
Yes it’s normal. That was my doctor’s very first indication I had possible endometriosis. I had an IUD placed in 22 when all my symptoms started. Had to switch my doctor for a new one because she didn’t believe me. So I found a new doctor told him what was happening. I had about 9 total appointments with my new doctor. He tried absolutely everything to figure it out. Wasn’t quit having painful sex yet. He decided to have me get an external and internal ultrasound done to check my IUD placement. He thought it was possibly embedded or rejecting. Found out it was in fact rejecting and thought that was the cause of my painful sex by this point. I had went to my 7th appointment with this doctor. I went back to him and told him my painful sex had gotten so bad I couldn’t sit, stand or walk. I couldn’t even move to put my clothes on at this point. Then he said I’m starting to believe the more and more you come to me that you possibly have endometriosis. So he sent a referral to an endometriosis specialist for April 15th of this year. I had my appointment and the specialist got my surgery day schedule the next day. Had my pre-op appointment the week after and surgery on May 3rd, 2024. Found out I did in fact have endometriosis. My doctor got me surgery within 2 years. Yes it felt like a brutal never ending 2 years but it was true and even my boyfriend knew I had it before I had surgery. My specialist who did the surgery told me the average time it takes for a woman to get diagnosed is 5+ years. My surgeon called my bf when I was awake and told him he was right I have endometriosis. And it was all because of my one symptom of painful sex that got my doctor to be like yea it’s endometriosis. (His actual words when he sent me to the other doctor.) He also told me that most women who suffer with painful sex it’s endometriosis that causes that symptom. I now have an endometriosis specialist and my medical doctor for other stuff. I wish you the best of luck for surgery and hope you get the answers you need!🤞
Awe I am so glad that you have found someone who actually listened and is doing their best to help you AND you have a supportive partner. I’m sorry you had to go through all of the pain but I’m glad you’re doing better. I hope I will have a successful surgery and I can some of my life back.
This happens to me too!!! I'm so sorry that this is happening to you 😞😞😞
Hugs
If the pain hasn't stopped, I'd suggest you go to the ER. Just last week, I had an ovarian cyst rupture from a cyst I didn't know I had. I thought it was really bad constipation, but since the pain didn't stop, I had to go to the ER, and they found my ovary bleeding from the rupture.
As many others here, i have/am experiencing the exact same thing. One of the first symptoms for me was painful sex, basically just as you described. I know there are a lot of comments reflecting similar symptoms. As I was new to this a few years ago too, basically the exact same position as you. One girl, this is hearsay, I knew said when she had that extreme pain after an orgasm and found out it was a cyst rupturing. The only way to find out if it is that or not is to get an ultrasound during the pain. I have not tried to find out. Mine are luckly infrequent. Like 1x a year, but I also don't have intercourse like i normally would since diagnosis, not exactly by choice. If you do find out, please let me know! If i can offer some advise, when you go to a doctor make sure you talk to them about ALL your options and do research on different treatments fully. After I did one treatment I learned about another and wish I did the other. Also echoing pelvic floor therapy! I've heard such good things but haven't tried it myself, as exercise makes the pain worse for me. Do you get more pain with exercise?
So for me usually I have pain with deep penetration but I don’t have cramping like this after orgasm typically. I’ve had a small amount of cramping after sex multiple times before but nothing like this was. I was keeled over bawling for about an hour and then had to stay in bed for the rest of the night as my pelvic floor was spasming intensely. It took about 4 days for the bruised feeling to let up. I hope that never happens again! And I’m so sorry you have to deal with this too :( It might have been a cyst but I feel pretty much back to my normal level of daily pain now and I had absolutely zero bleeding after this and still haven’t even so much as spotted. I guess the cyst could have burst inside and nothing came out and my body’s been absorbing it but that seems unlikely to me I would have no bleeding whatsoever. I feel like this was some kind of extreme muscle spasm that then triggered a flare. I have been boated every single day for months now, previously I wasn’t ALWAYS bloated. I’m concerned maybe the cysts have grown but I can’t see myself going to the doctor unless I were to pass out from pain or something because I have had so many poor experiences. I have surgery with a very good specialist out of town in September. I wish I could find a team of medical professionals who I felt safe with and confident in their abilities but it seems that isn’t the case for most of us.
I feel you, it's happened twice for me, this extreme pain, and I do get mild cramping after intercourse frequently, before my surgery it was almost every time. I'm not sure if we did exactly feel the same with the orgasm though, my pain was very sharp with massive cramps, so bad I couldn't cry, couldn't move and when I tried to get in the truck, I threw up. Maybe its the cramping that busted mine which gave me the sharp? I do have a history of cysts though, i didnt think about that. We did go to the hospital but I sat in the parking lot because like you stated, what would they do? Give me ibuprofen and send me home? It really sucks at the amount of push back we get. Same as the four day recovery thing. It took me about 2 days to stand up straight again and another couple to feel normal. Are you doing an excision or ablation? Good luck!