Pain during sex

[saha84]

Hi everyone! I've read quite a few posts on this but nothing that I think answers my question...

Is pain during sex caused by endo only referring to the deep abdominal pain you get(I know for some this extends into legs and back etc)?

Or does pain during sex caused by endo also include the vaginal burning sensation which occurs at penetration and throughout sex and beyond?

At my post lap check up my doctor told me that vaginal pain was not caused by endo. He said that this pain was caused by vaginismus (not sure on spelling) which is essentially a fear of sex or penetration leading to a tightening of the vaginal muscles that then causes a "rope-burn" effect (nice image eh?).

The reason I'm asking is because I was with my partner for around 18 months when I first started getting this burning sensation during sex. I had to undergo the indignity of a sexual health check up which I knew would and did come back clean... There is nothing that I can think of at that time that would cause me to be nervous or uptight about sex... and this pain was the first of my many symptoms that developed over the next couple of years and was one of the things that made me certain I had endo due to one of the symptoms being pain during sex. I had a lap and they did find endo... Now I'm not sure what to think. I now have vaginal dilators to help with the pain but I'm not sure if I need to accept that the pain is being caused by a mental rather than a physical issue.

So confused! (''.)

[merlin19]

Hi,

Sorry to hear you're having a bad time, but don't worry you're not alone! I also had both types of pain as you've described and I understand what your doctor has said but don't think they explained it very well. I will try.... when something is painful, in this case sex, and the pain is recurring each time it happens then the brain and body will start to become conditioned to expect pain and react appropriately - if you stand too close to a fire or spill boiling water you'll instinctively jump back to not get hurt - but the important thing is that this isn't a concious thought and reaction, it's automatic. With sex you may not be consciously thinking 'this is gonna hurt' but the body is used to tensing up at this time, and this could lead to the surface pain. So it's not really a fear as such, so you shouldn't feel bad about it, and it can be worked on to retrain the body to react normally again Also, take things slowly and get some nice gentle lubricant to help too.

xx

[saha84 in reply to merlin19]

Thank you so much for your reply. You explained it way better than I did. I guess the only issue I have then is that when it first started happening, I can't remember any other kind of pain or discomfort that would have conditioned my body to react like that. It was like, sex was totally fun and free and then suddenly one day it hurt but only as the "rope burn" feeling, not abdominally. So does that mean that the burning sensation I have or the vaginismus is caused by something other than the endo that I just haven't identified yet?

Or is there a chance that to begin with I was getting abdominal pain but I've maybe put it down to trapped wind or something else for so long, I didn't even realise what was happening? 🤔

The female body is like a cruel joke sometimes! 😀

[naszam]

I was in a similar pain, drs kept in fobbing me off. However I was persistent in nagging them something wasn't right and it wasn't just 'in my head'. Anyways, after a referral to pain clinic at BSGE centre, where I had to discuss issues and felt like I was being mentally assessed. The drs then checked me over and diagnosed Pelvic Floor Dysfunction. Finally an answer and I wasn't going mad!!! The pain does exist as my muscles are damaged!

It's such a shame as from the outside we look fine, internally we are totally messed up!

[saha84 in reply to naszam]

I've never heard of pelvic floor dysfunction! Time for Google!

[PinkieKT]

Hi

I suffer for this too, my first consultant was very unhelpful telling me there was nothing physically wrong with me (which is great in a way) it was all in my head & to just switch it off - erm if only it was that easy!!

I've had counselling to try & re-program my brain into thinking it's a lovely nice thing again, it helped but I'm not completely pain free.

I've a new consultant now who is much more understanding & trying to help me deal with this issue, we are trying another way to treat my endo which she hopes will also help me think about sex in a different way if I'm not constantly in pain with endo.

It's very frustrating having this pain & not really knowing what to do to help get rid of it. Luckily I have a very patient boyfriend who is willing to try most things to get us back to how we were & give me time to deal with this in my head.

Good luck, you'll get there eventually whether it's physical or a mental issue.

xx

[saha84 in reply to PinkieKT]

Thanks for your reply. I can't believe you'd be told to switch it off by a doctor! So unprofessional! Bed side manner anyone??

[rjp1403]

I have exactly the same thing and it's probably the thing that gets me down the most . I don't remember any other type of pain associated with sex - one day it just started being extremely painful (the rope burn thing is a perfect description!). This was one of the reasons endo was suspected with me too and when they went in they saw I had a lot of bowel and POD involvement. My consultant was confident once that had been sorted the pain would lessen but it hasn't. My second op was in January but still no relief. I'm waiting to be referred to a gynaecologist with an interest in psycho-sexual medicine but there don't seem to be many. The one my surgeon referred me to can't see me as 'I'm out of the area' which I didn't know was a thing! Anyway, i'm hoping once I do get to see someone that will help so might be something worth looking into with your GP?

[saha84 in reply to rjp1403]

I actually had a gp that was a specialist in women's health but she left my surgery. I've obviously then had a few appointments with gynaecologists but it's frustrating when it's men you talk to all the time. They describe pain and feelings but all they're doing is telling you what they've read in a book or heard from other women. Think it's difficult when you feel like they don't understand you properly purely because they're the wrong gender!

I need to persevere with these vaginal dilators and see if they help. There are 5 in various sizes. I can get up to number 3 with no pain but 4 hurts. I've not been good at persisting with them though but need to get back on it! It drives such a wedge in the relationship.

Could you try s ok me thing like that until you get someone that can help?

[rjp1403 in reply to saha84]

Thank you - that's definitely something i'll look into!