Endo and orgasms

[Orange244]

Hi all,

First time writing here but do not know where else to go.

I have been seen my different docs that have all suspected that I have endo. I eventually got referred to a gyno who was apprehensive to give me the possibility of a laparoscopy so I’m currently tricycling the pill.

I haven’t seen any real changes in my symptoms, however, I do understand that maybe I have not given it enough time. What has been worrying me is that my symptoms have started to get worse and I’m undergoing pain I’ve never experienced before. Recently I’ve been having really bad cramping pains in my uterus/vaginal area after having orgasms. These pains get so bad I can’t walk, I start to feel sick, need to relieve the pain through going to the bathroom (realised it actually makes the pain worse!) and I start sweating.

Are these pains something that people have experienced with endo or could this be something else? If anyone has experienced this, what have you done to ease the pain?

Any help would be appreciated, I’ve been trying to get hold of doctors who are all on holiday and feel very much in the dark! Just want a normal sex life again!

[elles3]

Hi! This definitely sounds familiar and I've always put it down to endo- I have stage 4 which is also deeply in my bowel. I found it got worse and more frequent when I was on the pill but I have no idea why and haven't been given any answers. I ended up stopping the pill (after that and other side effects) and it's much less common now. Not sure if it was linked!

When it happens I usually get a hot water bottle and just lie very still and ride the wave. I'm sorry I don't have more answers for you but I definitely think it's linked to having endo! Xx

[Orange244 in reply to elles3]

Thank you so much for getting back to me.

It’s nice to know that there are other people who are also experiencing this.

I hope you don’t mind me asking, but what did you move to after stopping using the pill?

Yes, hot water bottle has been helpful in easing some of the pain. Thank you so much for your advice, you have no idea how useful it is for me! Xx

[elles3 in reply to Orange244]

Hi! Sorry it's taken a while to reply. I am on no hormone medication now and just have to ride through the bad days with codeine. Contraception wise, we are about to try for a baby which is another reason I wanted to get off hormone medication! When I was running the pill through (the specialist recommended doing it for a whole year, which I did) I found after a while, although I didn't get the periods and all the problems around that, but I started getting breakthrough bleeding as well as random flare ups. My mood as well was awful and I lost my sex drive and felt quite depressed. Every time I have stopped the pill (I've been on and off it since I was 14, now 28) I've always felt so much happier in myself and my relationship. It's such a battle knowing whether to be on it for the pain, or off it for my mind.xx

[Wilder_ness]

Hi - you need exploratory surgery. Endo cannot be fully diagnosed or the extent of it properly mapped & treated without it.

I also had horrendous pain after orgasam (like a pinching pain) and I stopped having sex altogether but I would still wake up in the night in agony, if I had dreamt about it.

Please, please know that this is not normal. If you were a man would it be normal?

I don’t know why your gyno consultant is reluctant when you have v clear symptoms of endo?

Masking it with the pill will not make it go away, it will mess with your hormones and only delay your treatment. And you can only have a clear treatment plan when the extent of the endo is discovered.

I had stage 4 endo and I couldn’t advocate for myself for a long time. Please act swiftly on this and take someone with you, if you feel you won’t be anle to get your point across.

Sending love 💗

[Orange244 in reply to Wilder_ness]

Thank you, thank you, thank you.

It feels so nice to have someone echo what I’ve been feeling. It is not normal to have this pain.

To be honest, my whole experience with the gyno was very unpleasant. I felt like I wasn’t being heard and he was just not empathetic. When discussing the possibility of having a laparoscopy, he said he wouldn’t do it unless the person was “very poorly” which was just incredibly disappointing as I felt like he totally dismissed the pain I’ve been going through over the last three years and it was as if the pain which I’m currently going through is liveable despite only chatting to me for 15 minutes. I can’t cope with it anymore - mentally and physically.

I have a follow up telephone appointment with him in a couple of weeks so I will try to take your advice! Thank you so much for the words of encouragement!

[Wilder_ness in reply to Orange244]

Hi, write down what you want to say before the telephone call. Tell them the impact this is having on your quality of life & ability to do basic tasks.

That the pain you’re in is unbearable and you cannot cope anymore.

Good luck 💗