Dyspareunia - painful sex - as main symptom?

[Mountainliving]

Hi! Can anyone relate to painful intercourse as the main, telling, symptom?

I don't know if it's because I have been so used to painful periods all my life. Only since the deep dyspareunia got unbearable, I started to reach out for help. Now it seems that the symptoms line up with endometriosis:

- Painful periods

- Irregular bleeding

- Specific pelvic pain (I think the feeling like -a cat scrating the inside of your uturus- is a very accurate description of that unsettling pain)

- Deep dyspareunia, painful sex that can feel like a lightning strike, taking my breath away. Recently joined by entry dyspareunia, I think due to the anticipation and anxiety of having sex.

- Bleeding from bowel, abdomen pain

I haven't been diagnosed so I'm not entirely sure. My doctors keep brushing it off as stress, depression, mental health related. Can anyone relate to this? Does it take a laparoscopy to confirm?

Appreciate all replies! ❤️💛

[CryBaby91]

Hi!

I would say that your pelvic pain and bowel symptoms are the main ones that shout endo to me, but I'm not a doctor! Yes painful sex is definitely related to endo, so absolutely is a symptom. All the symptoms you mentioned are so yes definitely chase up a diagnosis, sadly we have to advocate for ourselves 10x more with endo because it is so poorly understood and hard to diagnose.

Deep infiltrating endo can be seen on scans, as can cysts. So if either of those are present and you had a fantastic person reading the scan, then it would be possible to diagnose endo via scan. There is no blood test sadly. Pain doesn't relate to endo severity, so you could be stage 1 and have severe pain or stage 4 and no pain at all. It is very personal, so sadly symptoms don't help with diagnosis either. The gold standard is laparoscopy. I had pain for longer than I can remember, and was only diagnosed 2 weeks ago! So please don't give up all my scans were clear and I was told it was in my head. During the lap they found endo on both ovaries and my bowel fused to my womb wall with thick adhesions. So I can definitely say that clear scans mean nothing! Please push for a lap xxx

[Mountainliving in reply to CryBaby91]

Hi, and thanks so much for your reply! It means a lot.

Amazed to hear that you have just been diagnosed after a laparoscopy after so long, and very sorry to read that you have been dealing with that amount of uncertainty!

I should have noted I have had a pelvic exam and an ultrasound, where they could not find any issues. Afterwards, they made my promise I would let go of the idea that there is something psysically wrong. (Like you said, 'all in my head') How can they say that when endometriosis is apparantly quite common!? I had never heard of it up to last week, but how the medical world still struggles to recognize symptoms is a real worry.

I've been doing the recommended therapy, pelvic floor exercises, desensitisation with dilator every since... But we know our own bodies, right?! It simply doesn't feel like something stress would cause.

Preparing for the so-manieth doctor appointment now, and will do my best to be assertive. Again, thanks for your reply - hope they will find an effective treatment for you after your diagnosis 💫 x

[CryBaby91 in reply to Mountainliving]

Ahhh the good old "Your scan is normal so you're a hysterical woman" line lol I think every single person on this group will of heard it lol! Sadly the simple explanation for why we have so little understanding of endometriosis is that it is a woman's (or female at the time of birth) issue and as such hasn't had the medical research it needs. Lots of "women's health" like contraceptive treatment etc has been poorly funded, and staffed by men lol. Gosh it wasn't even that long ago that doctors prescribed orgasms to us and shoved us in asylums. Our health has been grossly under funded, under researched and under valued. Leaving women gaslighted by medical professionals into thinking vomiting with pain from your period is somehow normal....and now I'll stop ranting LMAO sorry, this gets me going massively and I get a bee in my bonnet hahaha!

Have you tried different positions when having sex to see if it helps with pain? I find doggy the absolute worst because it pushes on my cervix. But doing it spooning or missionary isn't as bad, also doing it with you on top allows you to control how "deep" you want to go. I can agree with the possibility of anxiety related problems, it could be contributing slightly but it is unlikely to be the only cause! If you're mega struggling then I would massively recommend just doing foreplay on a bad day. Something nice and gentle and I've always noted that it is worse for me when i ovulate, so we avoid full penetrative sex when I'm around that week. Might be worth tracking that with an app to see when the optimal times are for you?

Have you been trying anything like diet changes or probiotics for the symptoms? Doctors are great but I've found having a whole approach can really help, tackling all areas like diet, exercise, supplements, massage, painkillers and alternative treatments like TENS and Heat I started trying pretty much everything. Nothing is a cure but it all chips away at how disabling it can be if you ever need a chat or some advice feel free to pop me a message xxx

[Mountainliving in reply to CryBaby91]

It's so strange and shocking how common the struggle with not being taken seriously is among us all here! I've only just come across information about endometriosis.

I called my physiotherapist who specialises in pelvic floor yesterday, and was somehow still expecting some level of understanding from her. Her reaction to my careful mention of endometriosis was apalling:

' You THINK you have endometriosis now?? '

' Who told you that you may have endometriosis? '

' Darling, you had an ultrasound and everything was fine!! '

' You will have to convince your GP to get a laparoscopy to get this out of your head, and proof once and for all there is nothing physically wrong '.

I was just lost for words! But at least I have her support for getting a laparoscopy, even if she just recommends it to cure my -hysteria-.

You're so right in that quite good rant, not enough has been invested in women's health at all. Thinking back now, the whole team of doctor's has ignored clear warning signs in the past few years. I didn't know about endometriosis, but they should though!!

I have tried different positions, and wholly agree that doggy and anything with legs up is not an option. Spooning and missionairy is ok, but I am very busy with controlling his movements 🙃 On top best for control, but I struggle to relax my muscles! We've tried actual penetrative sex about once a month, it's very sad how non-existent a sex-life is now. But I think the confusion, worrying, uncertainty is the worst! If I get a diagnosis that makes sense (instead of it being blamed on depression or stress), I want to work on this and find ways to get that intimacy back!!

Good point about ovulation and the effect on painful sex, I never connected my cycle to the dyspareunia before but it all starts to make sense now! Do you know a good app? I suppose tracking may also help convince my doctors..

I have not tried any of those remedies you mention, my sexuologist and physio literally told me to stop researching and reading on the internet. They said that I was making my symptoms worse by looking for info. I feel very silly for listening to them now.

I was a wreck yesterday, an absolute wreck. But looking at it all a little stronger today, I would love to start looking at any other remedies - thanks for the offer to send you a message. I will!

💛

[CryBaby91 in reply to Mountainliving]

Omg that is absolutely disgusting! Rule number 1 with endo is that it rarely shows up on a scan! All my scans were clear yet my bowel was stuck to me lol so if you do see that physio again and she mentions it then maybe explain that you've had advice from the endometriosis charity about clear scans! I honestly can't believe the amount of gaslighting that we all have to put up with. It is shocking, like you said these people are medical professionals, why on earth don't they know!

I can highly recommend Glow if you have an android phone I have a Samsung and it links up with my Samsung health app too and my Samsung watch. So i get everything synced up together, my sleep, diet, weight, exercise, heart rate, oxygen and cycle is all monitored through 2 apps. It's been a game changer for getting some answers to what happens when in my cycle! It even flags up insights (i have Premium so it might not be in the free version) where it warns you about certain symptoms being a concern, mine told me about 10x in one month that my symptoms were suggestive of endo! It is such a good app, really helps to build an overall picture of your month.

Yeah the higher your hormones the more likely symptoms will be worse, I mean lots of us have pain daily regardless of the cycle but generally my worst days are related to either my period or ovulating. So avoiding sex around that time is generally a good idea! Or just penetrative Sex anyway lol nowt wrong with some fun foreplay if you're ovulating! And orgasm actually helps relieve pain ironically, it releases chemicals which kill pain and increase happiness! So that is a good excuse to just do some gentle foreplay and sexy massage hehe not everything has to be about full on sex.

Oh jeeez they HATE us googling stuff when they are not knowledgeable lol I had one gyne try tell me that back pain wasn't a symptom of endo and that it was impossible for it to grow outside of the womb! And that scans would show endo lol which was obviously incorrect. He made me cry, i felt so ignored and fobbed off. I found a BSGE registered hospital near by that was NHS and asked my GP for a second opinion with them, they agreed that because my symptoms were so severe i needed to see a proper specialist, especially because the first gyne had let me down so badly. My new gyne team actively encouraged me to look online for advice and support, they suggested researching the effects of diet on endo and the side effects of GnRH treatment. So a good doctor will absolutely say that it is a GOOD idea to know more about your health. I would only discourage trying a new medication without discussing it with a GP first, but exercises and diet changes can easily be done. As can things like TENS machines and heat pads! That person obviously doesn't want you to be too knowledgeable because youll be vocal then about getting help lol stand your ground, read up on everything you can and then if someone is ever ignorant again you can slap them with facts hahaha

Any time xxx

[Mountainliving in reply to CryBaby91]

Absolutely agreed!! So I said to the pelvic floor specialist that I don't think endometriosis always shows up on an ultrasound scan, and she did. not. know. this.!!

I am just in awe at how someone who leads the whole hospital department for pelvic pain does not know basic details about a common chronic condition.

The good news: my GP did take my realisations seriously and has ordered a laparoscopy 💪. She was a bit confused that I had not mentioned some of the symptoms before like the bowel pain/bleeding or a history of painful periods. But how could I have known that that was important? I'd never heard of endometriosis!

Thanks so much for the GLOW app advice, I downloaded it straight away! 🚀 Feels good to feel a bit more in control. Considering a smart watch as well now.

I'm very impressed at how you have taken matters in your own hands and are exploring ways to feel better on so many levels. 🙌 Gives me hope after a rollercoaster of a week. Thanks for taking the time to write and reply 🙏

Could I ask if you were on hormonal birth control during your journey to get a diagnosis? I'm actually going to do a post about this I think. I feel like I'm in a huge jigsaw puzzle since I've become aware of endometriosis. Hopefully the waiting list for a laparoscopy won't be too long.

[CryBaby91 in reply to Mountainliving]

My GP was the same too when I mentioned the pain when I poo (only if I'm on my period) lol but I told them considering the horrific pain in my back and legs on a daily basis....that seemed relatively small. It doesn't help that we only get 10 minutes does it, because how on earth do we list ALL the symptoms and discuss a plan of action in that short time? No wonder they focus on things like bloating and back pain and then think hmmm IBS!

I'm so so so glad they've taken you seriously finally! It only takes that one GP to listen and then you have a foot in the door, if you can try speak to that one from now on. I know it is hard but sometimes speaking to a crap GP is worse than no GP at all. Regarding the lap wait time, I waited around 56 weeks for mine so just be prepared for a potential long wait, but you might have better wait times depending on what trust you're with. Soon as you get on the list find out the average time by calling the waiting list, it gave me an average but it wasn't concrete. I had a cancelation for mine otherwise I would of still been waiting. Literally had a call and 5 days later I was in surgery!

Awwww don't be making me blush! Haha! No problem at all, I'm happy to chat any time if you need to I adore my smart watch, definitely makes monitoring my health easier couldn't recommend it more tbh. After all this time of being poorly I've ended up having to take it into my own hands, because otherwise you go mad haha. It really helps you feel mentally tougher too, because otherwise you're kind of left waiting for the doctors to help. Honestly though if you ever need a chat my inbox is open, I know how hard all this is and the fight can get tiring.

Haha yes I've been on hormonal stuff on and off since about 13. Had an awful time on the combined pill until 16, had to come off that because my dad had a DVT so I was at risk. Ended up preggo at 17 so things calmed then until I was about 21, then I was just getting worse and worse. Used the pop pill but again found things were bad, not just pain but other symptoms. Pregnant again at 25, had a c-section with him and the pain after all that just became ridiculous. The pill was making me gain so much weight and my PTSD was being triggered really bad, so my husband and I agreed that we needed a permanent solution. We didn't want to risk another baby (I had bad complications and almost died twice) so a vasectomy was a no brainer! After that i got rid of the pill, that was 2018 so I was 27. Omg the pain, I lost so much weight (silver lining), went down from a size 14 to a 10 in 6 months. It was horrific after that. That's when endo came up, because we finally saw the period and ovulation link. I'm now on GnRH (menopause injections) and that's bringing loads of crap symptoms too. Xxx

[thistle3]

Hi!

Painful sex was the symptom that got me back to the doctor after many years of being told (and just accepting) I had 'bad periods'. I used to get sharp pains when in certain positions, a burning sensation in my pelvis both during and after and generally just a lot of discomfort and not a lot of pleasure! I'd also have very painful bowel movements during my period.

I had ultrasounds, internal examinations and MRI before my lap. Ultrasounds were clear, internal examinations found some tethering and I have no idea if the MRI showed anything or not, they never told me. Anyway, fast forward and lap 3 weeks ago confirmed significant endometriosis.

Definitely pursue this with your GP or get a second opinion if they're not referring you to a gynae. It's also worth keeping a diary of your symptoms (specific issues and when they occur), so you have hard evidence to present to them.

Best of luck with it!

[Mountainliving in reply to thistle3]

Hi, thanks for this! It really sounds like very similar symptoms to what I experience. I was just so in the dark about endometriosis, I never connected the dots until now.

And the ultrasound being clear, that seems to be considered holy. I got hold of the report the gynaecologist made after the ultrasound (which was not shared with me last year).

It states that everything looks fine, but that I expressed pain when she moved the instrument towards my ovaries, and that I told her that was the same pain as what I felt during sex.

It just puzzles me how that didn't bother them, it wasn't worth looking into.

I'm glad you got that diagnosis and are looking at more clarity, although it can't be easy to face the certainty of significant endometriosis ☹️

I contacted my pelvic floor specialist yesterday who thought I was crazy but did hope I could get a laparoscopy 'just to prove that there's nothing wrong with me'. GP next. Fingers crossed. I'm planning to make a history overview of my symptoms and start tracking straight away, hopefully that will make her take it seriously. Thanks for the advice and best of luck to you too 💛

[BloomingMarvellous]

Yea gods a severe case of hysteria. The Dr’s that is, certainly not yours. OMG I have a woman here with painful period history and now she’s complaining of painful sex how on earth do I cope, what do I say ….. blank brain…. Oh I know the answer she’s hysterical 😂.

Utterly inadequate response to your situation. Go get yourself to an endo interested woman friendly unfearful medic and have the chat. You’re not bonkers lovely. Your in pain and that is not rooted in your brain

[CryBaby91 in reply to BloomingMarvellous]

Love this reply

[Mountainliving in reply to BloomingMarvellous]

Ha, exactly! I feel a bit silly for trusting my doctor's soooo much. We emigrated from the UK to Norway three years ago and we were having trouble getting a Norwegian health system number due to Brexit, so I ran out of birth control pills. Thought that was fine, we'd just use condoms for a while.

OMG, little did I know the horrifying effect of going off the pill after 14 years!! So my GP recommended a coil, I fainted when she inserted it. Nothing but increased pain until she took it out again a year later. I told her that I felt like I was on my period for 3 weeks per month, with maybe a few days break.

In the meantime, she tells me my deep dyspareunia symptoms are vulvodynia, and supplies me with numbing gel. I was mystified.

You'd think that with proper training, an endometriosis warning light would have been going off by then. Instead, I was sent to a sexuologist who told me to simply stop having sex, a pelvic floor specialist who gave me some muscle exercises, and the psychiatric clinic because of my ongoing complaining.

Thanks for your lovely reaction, I really hope I'm not bonkers. I don't want to say that I hope to have endometriosis, but I do hope for clarity! 💛

[BloomingMarvellous in reply to Mountainliving]

Well, that’s a nice bit of medical socialising with fabulous outcomes. Not. Honestly you’d have thought at least one of the numpties would have had at least a query . Ah no, hysteria is clearly infectious. Have been told after life threatening medical scenarios ( yup, constant vomiting, sepsis, violent blood loss and losing 4 stone in 3 months to 6 stone ) that it’s “in my head “. As if. When the care is inadequate, investigations draw a blank the correct response is not to turn on the patient with their frustrations and inadequacy and start blaming. Yes , sometimes mental health is a real issue and needs brilliant care too but their fear of failure is pathological.

[Mountainliving in reply to BloomingMarvellous]

That is insane, you had to go through all that! This is what really gets me, this condition is dangerous and life altering in so many different ways. And all this delay is causing damage.

Mental health has always been a seperate issue I thought, but now I see how it makes sense that depression and self-image turmoil can totally be connected to endometriosis.

If I get diagnosed with endometriosis, I will force that whole hospital to have a mandatory information seminar about it!!!!!!!

[BloomingMarvellous in reply to Mountainliving]

It would be a gift to them . Joking aside. There is an increased level of bipolar occurring alongside endometriosis but I figure that’s because of certain shared genetic pathways. Whether a factor or not the treatment received by a lot of women and attitudes are more than ample to cause depression and anxiety all by themselves. It’s shameful and it’s end of days for such antiquated ways.