endo and sex

[Bondi64]

Hi all, looking for ideas and advice

No other way to say it but be blunt…

Recently went for a smear and it was quite possibly the most painful I’ve had, quite a wake up call since being diagnosed 2/3 yrs ago

I went away worried thinking are ‘things getting worse’ , is daily pain contributing to tighter muscles, the nurse mightbhave been rough, she asked if i was active in exercise which can make muscles stiffer so maybe that contributes?

But this is also added to the fact that i cant even have an orgasm without sharp sharp pain all across my abdomen.

Its become a real anxiety for me that sex might not be possible, a real barrier to meeting someone new so i wanted to ask if any ladies had ever:

- seen anyone about pelvic floor like a specialist physio?

- Know of any useful exercise or toys or anything that might help calm the tension, and teach my muscles to say hey… its ok if penetration of a spectrum or a partner occurs!

- Seen any consultants who specialise in pain, nerve pain for any advice or solutions

- Ive avoided surgery and not keen on this given its complexities and no guarantees but was that ever a solution for anyone?

All advice welcome x

[Endowarrior2780]

It's so painful I haven't been able to be with my partner for 7 months. Even a internal ultrasound hurt so much I'm not willing to try anything until I have more surgery to get it removed It the only advice I have

[Kit38 in reply to Endowarrior2780]

Long time sufferer, married for 20 years. Speak to your gynecologist. Back on my 20s I am nearly 40, I would have to go long periods of no sex. But I will say this there are other things you can do with a new partner that isn't full on sex. You need to find out what your comfortable by yourself first is toys that are more outside then inside then move onto them this is what my gynecologist showed/told me. Don't know how old you are, but this side of you isn't over. Just breath. But in the end surgery can be your be a option. Hope this helps.

[Kit38 in reply to Kit38]

Oh and one thing get a hot water bottle ready before you start trust me, it's better to have it ready. Also take pain relief before it will take the edge off. Good luck.

[Selfel]

I haven't had a similar experience so not sure I can offer too much. I do, however have a relative who is going to a specialist physio as she was finding sex painful due to a tight pelvic floor. She is finding it helpful. It does depend on whether your issue is tight muscles but may be worth looking into.

[EndoCoeliac_Woman]

For me the pain was when he was going very deep. They found leasion at the back of the uterus and removed them. After was way better. If you have pain all around might be inflammation other than scar tissues. Do you have pelvic pain frequently or it's just pain during sex? For me funding out I was also coeliac and going on a glutenfree diet made a lot of difference because the inflammation in the abdomen was making sex painful (and I was even getting bloated in the lover pelvis after). Now is way better but I also noticed that I reach the orgasm easier (and faster, which means less pain after) since I'm doing exercises for the pelvic floor, so I really recommend them

[RedCat24]

I have painful intercourse, internals and ultrasounds are very uncomfortable on my cervix, I havnt found anything that helps and it's rare I have intercourse, more foreplay has worked better

[HedgehogMad]

I've been seeing a women's health physio who has been brilliant and I am now able to have relatively pain free sex after working on exercises to relax the pelvic floor. I'd highly recommend going to see one as it's been really useful. However she did say that often it works best post op as once the source of pain is removed it's easier to restrain the pelvic floor muscles to relax.

[fearsmarrow]

I totally get this, i'm on zolodex now which helps, but definitely go see a pelvic health physio specialist- it's embarrassing and awkward but i have what she called 'an anxious vagina' the chronic pain has made it so stiff and the thought of it hurting is unbearable making it worse. Relaxing is the key - although this has made my post childbirth leaking worse, there are loads of exercises you can do. It takes a while but the physio helped explain so much.

Also really recommend getting a bullet vibrator and if you can having an orgasm on your own first before the actual act, it makes me relaxed enough to try. Loads of lube too - you can get these yes tubes of vaginal moisturiser from Yes which have been a game changer. Be really kind to yourself, it's so unfair no one talks about these things. Also hot water bottle all the time and taking rotating para and ibro to stay on top of the pain will help. I went through a phase last year after an internal ultrasound where day to day pain was so bad i couldn't walk. It took about 8 weeks to get back to even trying - but I found taking a codine first helped too.

[emilylb]

hi! I’ve been seeing a pelvic floor physio (private) who has done a really thorough assessment and given me some stretches, and also some homework for gentle self touch. My husband and I are also seeing a psycho sexual therapist (nhs), who uses a CBT approach. Im only really at the beginning of my journey with both, and both take time and work but im hopeful they will/are both helping. Xx

[DylanCloud]

I completely understand how you are feeling. I haven’t been able to be intimate with my husband for almost 2 years. The pain I experience is horrendous so we just don’t bother and that makes me so sad and upset.

I’ve tried dilators, lubrications, Mindfulness techniques and nothing seems to help. I saw a counsellor about it and she told me that the pain was all in my head! The most infuriating comment, which I’m sure many of you have been told before too. I always bled afterwards and was in pain for days afterwards so to be told it’s all in my head was so frustrating, she invalidated my experiences and made me doubt myself! I never saw that counsellor again.

I am due to have Pelvic Physio soon, I’ve been told that can help, I am willing to try anything.