Pain during sex

[Bumble01]

Hi everyone.

I have endo, I discovered this when I was 18 due to having all of the symptoms. Docs wernt helpful at all . I've always found sex a bit uncomfortable but always just carried on and never told my boyfriends about it. I had a 7 year gap of no sex and now a new partner when we tried to have sex it was so painful I couldn't bare it. First of all we couldn't even get it in then when eventually we did it was so painful I just couldn't do it. Tried 3 times in different positions and really slowly and I couldn't bare it at all. My boyfriend was so good and said it really didnt matter but I felt so awful and now I'm worried that I'm never going to be able to have sex and what that will do to us. I wondered if anyone has any ideas of things to try and why it would be so much worse now. It was never anything like this. I know ultimately I have to go to the docs but I'm really scared about what they will do in terms of assessment and I'm also embarrassed to talk to anyone about it.

Thanks

[Hidden]

Have you tried pelvic physiotherapy? Endo can cause the muscles to 'freeze' and then penetration is painfull. So the therapist can free the muscles. You could also have Adenomyosis which pushes against the vagina which can be painfull or Endo just more in the lower regions. But first, go get the Physio, it really helps! Then of still hurts (deeper penetration) you could buy the Ohnut, These are like little buffers, like soft cockrings...

Also make sure there's lots of foreplay so your really horny and not concentrated on potential pain...

In the mean time give eachother cuddle and massage time so there's still intimacy...

Good luck

[Bumble01 in reply to Hidden]

Thanks very much. Can a normal physio do this or should I look up a special medical one? Not sure if it's anything to do with it but I do have quite a painful body in general working and riding with horses I always have tight muscles and I have a sports massage.

[Hidden in reply to Bumble01]

According to Melissa Turner you can try Mayan massage as well (her pain protocol). You can ask your GP for a referral to a pelvic floor physiotherapist in the hospital. Do phone upfront to see if they specifically know about Endo. For the muscles you can take Epsom salt&baking soda&lavender oil baths (footbaths if you don't have a tub). You can also get magnesium sprays. Arnica (internally) might help too if your really sore after riding your horse...

[Thompson36 in reply to Bumble01]

My local physio also offers a female therapist who helped me after I had my hysterectomy. She said my pelvic muscles where extremely tense/strong (good on the one hand) due to years of pelvic pain. Was a little alarming at first to have a physio do an internal but she was really good. Agree with other posts re Endo deposits tethering/pulling you internally. When I had the hysterectomy he said my bowel was stuck as well as new deposits on the ligaments xxx

[Bumble01 in reply to Thompson36]

Ok that's interesting. So is that the pelvic floor physio? How do they do it internally if you dont mind me asking

[Thompson36 in reply to Bumble01]

I’m not sure, it’s just a local GP referred physio that offers female “issue” related physio. It’s offered for hysterectomy/prolapse etc. But would of thought it would also help you. It was similar to a normal internal but more gentle, she gently inserted 2 fingers and using small gentle movements felt the structures and walls and told me when to squeeze/hold etc. There were also follow up exercises to do at home.

[MTL2008]

I have a similar experience. I haven't been diagnosed with endo yet since I don't have all the symptoms. My periods are not painful but I do have strong painful sex with deep penetration (probably endo or scar tissue from a surgery I had several years ago). Because of the deep painful sex, my pelvic muscles now go into involuntary spasms making impossible to have sex. I haven't had proper sex for 5 years now. My doctor suggested pelvic floor physiotherapy and a website called vaginismus.com

Unfortunately none of them (physio and dilators) were not that useful in my case, because as it is stated in the book of the vaginism website (very interesting book and kit) you have to fix the source of your pain so you can start enjoying penetration again. Once your body knows that sex is not equal to pain, then all your muscles will stop the involuntary spasms.

There is a book that I found very interesting called Healing Painful Sex by Deborah Coady . There you can have all the types of painful sex and how to try to fix them according to where the pain is. As you can see I did a lot of research. I think information is the key. I have a new partner now and I feel so much better because I can tell him what's wrong with me (the spasms) even if the source of pain is still unknown.

Everybody is different and I hope you find the source of your pain so you can fix it.

I have an appointment with my doctor again this November to try to see what our new approach will be. In my case I think the next thing is laparascopy surgery because most of the time, in both cases (endo or scar tissue), that's what you end up doing. I might try the Ohnut thing suggested in the previous post. Who knows, maybe I can avoid surgery with that device.

[Bumble01 in reply to MTL2008]

Thank you very much I will look into all of that! When you went to your doctor did they examine you and how bad was it? I'm worried they are going to stick things up there haha I dont even want anybody to look at me but I guess I will have to do it 😟

[Hidden in reply to Bumble01]

If you don't want to be examined you really should say. Mind you the pelvic floor therapy is also internally. I was crying during so I know what you mean (had been abused), none the less it did work and helped a lot.

[Hidden in reply to MTL2008]

Mtl the Ohnut really does work with deeper penetration, but don't see it as a replacement for something serious going on. Look up Nancy's Nook Endo Facebook group to learn more about wide excision, which is what it sounds you might need. There are surgeons in the UK that do it, which are on the list.

[MTL2008 in reply to Hidden]

Thanks for your message Horsie. I know the Ohnut won't be a replacement for something serious going on. The thing is that nobody knows for sure what I have. My gynecologist (who is an endo specialist in theory) said that he doesn't want to do the laparascopy if he's not sure that I have endometriosis, especially if it doesn't bother me that much. Like I said my only symptom is deep painful sex and a retroverted uterus (which is a recent symptom). When I look all the things that women go through when they have endo, my problem looks like a joke compare to them. But then the more I read (books and scientific articles) the more I see that something is wrong deep inside. That's why I think that I have scar tissue from a surgery I had 12 years ago on the same side of the pain. My appointment is on Wednesday, if my doctor doesn't give me any other solution/treatment I will look for another opinion. We'll see. I live in Canada by the way, but I found this website very helpful. It seems that the UK is ahead of every other country when we talk about endo. Thanks again.

[Bumble01]

Just to update everyone I went to the sexual health clinic as I've always found them more helpful that doctors for all this stuff and was referred there by docs about the endo before. They told me it doesn't sound like endo as my pain is around the opening although I also have pain deep inside so poss have endo still aswell. They said at this stage it's so painful theres no way they would be able to do an ultra sound with how I am atm so I've been referred to a sexual counselor who is going to help to train my brain to think positively about sex and some numbing cream to try and get all the muscles to relax as they are frozen solid. Apparently I have vagimosis but I'm not sure that any of these things are going to help.

Also my new partner left me after a week and I have no idea why it all of a sudden went weird when he said he wanted to spend the rest of his life with me so I can only guess the not being able to have sex made him disappear and now I just feel like I'm not going to find anyone that will stay with me if I cant get this sorted out!

[Bubble_by in reply to Bumble01]

I had vaginismus too a few years ago and felt EXACTLY the same as you.

I know it's horrible being dumped because of it, cause I've had boys leave/cheat on me because of lack of sex too. But you're worth ten of them and don't deserve you anyway 💕

My miricale cure was a botox injection (into my vagina) followed by dialator therapy. Sounds bizzare but I no longer have any pain when being penetrated (apart from when my endo plays up, but that's another matter). The botox 'freezes' the pelvic floor and althe the dialator therapy allows it the be reset pain free. It was an absolute game changer for me and I no longer get those God-awful spasms associated with vaginismus. Of course different things work for different people, but I hope you find some answers soon.

[Bumble01 in reply to Bubble_by]

Wow thank you I will defo look into this thanks for your help!