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Endometriosis UK
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Endometriosis and sex

Hi,

I was hoping someone could help me, I have suspected endometriosis and I'm getting my first lap soon. I am only a teenager and I am worried because I havent mentioned my pain during sex to my Dr because I don't want my mum to find out. Do you think it is is important information that the dr/surgeon should really know ?

33 Replies
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Hi I would say it’s a symptom that many of us suffer from, remember what is discussed between you and your doctor is confidential. You can speak openly to them and it would never go further x

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Great, thank you for your reply. Do you know whether telling the surgeon this would help them to find where my endometriosis is? I mean to say, does pain during sex mean the endometriosis is in a certain area? X

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Hi that’s alright :) I really don’t know, I have this issue too but maybe one of the other ladies on here can answer this as many have had experience of laparoscopy (I am only at the stage of being referred) etc .... you will get lots of support on here x

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Thank you for taking the time to reply, hope you get the help you need and start to feel better soon X

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You too x

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Hiya - I'm sorry to hear you're going through that. I also experience painful sex - it's important to tell your doctor all of your symptoms, so they get a clearer picture of your endo. Doctors are bound by patient confidentiality, so they won't tell your mother anything without your consent - to be extra safe, you can specifically ask them not to say anything, but they shouldn't anyway. Pain during sex can mean that your endo is clustered in certain areas - commonly somewhere called the Pouch of Douglas, which is where I have it - but sometimes it's totally unrelated. Good luck xx

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Thank you so much, I will tell my Dr privately thanks for your advice, although very sad it's also reassuring to hear that someone is experiencing similar things and that I'm not crazy, best wishes to you x

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Hey, I had the same thing when I was first diagnosed because my mum was with me, if you have an opportunity to call you GP or specialist I private and just advised them you want it confidential and not to mention it when your mum is around they will I done the same thing. I think it is important they know because if they understand your having all the symptoms they will push more for a specialist referral so they can give you the correct treatment! Hope this helps x

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Thank you for your reply, I took your advice and told my surgeon and I was very glad I did x

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Aww that’s good I’m glad to here! I hope things get sorted for you :) x

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Yes pain with with consensual sex should be something to bring up

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I am waiting for my 3rd operation for endometriosis and would say my worst symptom is still pain during sex. I first spoke to my Dr about it (along with all my other symptoms) 9 years ago when I was 17 and they were extremely understanding and sympathetic and they will not tell your parents. Definitely worth mentioning as it is a horrible symptom xx

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Thank you very much for your advice and understanding x it is reassuring to hear from someone who went through similar during the teenage years, hope you are well x

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Hi they may ask you when you go into hospital as they asked me but with you been young they might not, but this is a sign of endometriosis so it might be worth telling them if you can when your mum isn't around it will be put in your notes and it's confidential so they won't need to tell her. I'm 30 and married and have 2 children and they went into detail about me having sex in front of my mum and even I felt uncomfortable!

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Aw thank you so much for your reply, I was very glad I did tell my surgeon because it helped him to find my endo. That sounds very awkward and I'm glad my Dr didn't do the same! Hope you are well, best wishes x

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Hi

I would definitely share that information with them you can do that privately. Pain during sex is a common symptom x

I hope it all goes well x

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Thank you for your reply and your advice, it helped a lot. I think I needed that reasurance so I am very grateful. hope you are well xx

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Hi :) definitely tell your doctor, they cannot share any of your information unless you say so! It won't necessarily help find where it is as all of my pain is on the right side of my pelvis but the Endo was worst on my left side and round the back of womb. That said, it is a symptom of Endo and they should know you are experiencing that. Good luck with your lap! xx

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Thank you for so much for your reply, amazing advice! My endo was found around the back of my womb aswell and the Dr said that that was the reason for my painful sex so I am so glad I told him x hope your endo has settled down and isn't causing you too many problems , thanks again x

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The pain during sex is important as it can help the doctors work out where the endo is, or whether the endo has caused certain parts of organs to stick together, and how it's affecting your life.

As others have said, what's discussed should remain confidential - you can ask for a note to be put on that it's sensitive information - so even if your mother is present with you they won't mention it.

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Thank you so much for taking the time to reply. Your advice and reassurance is very much appreciated and helped give me the confidence I needed. Hope you are well, best wishes XX

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Hi,

If your Mum hasn't been present during consultations then what you say is confidential and your doc won't discuss your sex life with your Mum.

If she's been there and it's stopped you speaking then it wouldn't do any harm for your doctor to know - phone the hospital you were seen at, ask to speak to your doctor's secretary. Explain that your mum was present during consultation and you couldn't discuss openly all of your symptoms - say you're worried as surgery is coming up and ask she pass on the info re. painful sex to your doctor.

Make sure you are having excision surgery with an endometriosis specialist

bsge.org.uk/centre/

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Thank you very much for your reply. Thanks to you and everyone else's helpful comments on my post I was confident enough to speak to my Dr privately. Thank you so much for your help. I hope you are well, best wishes x

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It is absolutely vital. I am also hoping you get regular vaginal swabs to check for sexually trasmitted infections (which can be contributing factors to endometriosis) and especially a pap smear every three years. Please, DO NOT EVER let any piece of info out when talking to a gynecologist, especially if they'll have to perform surgery on you.

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Thank you very much for taking the time to reply, I told my Dr all the information like you suggested and I'm so glad I did! Thank you again, hope you are well x

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Remember: endometriosis can cause adhesions and cysts of various kinds but surgery can even make a woman with stage 4 endo fertile again.

Tubal infertility CANNOT be treated in anyway and it is mostly caused by sexually transmitted diseases so please, vaginal swabs are VITAL for your fertility. Probably the most important thing you can do.

Never forget that.

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Yes very. I was diagnosised with Endo 12-4-17 and sex was painful for me too.

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Thank you for your reply, I hope it has settled down some from then, wouldn't wish this on anyone so I'm very sorry to hear, best wishes x

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Hello !!

I’m only 18 & it can be a bit embarrassing/ scary to speak about something so intimate but it’s so important to speak about it - it’s nothing to be embarrassed about - and if you’re worried about your mum finding out then just speak privately .

For me , I have pain during sex and also examinations and that’s what actually got the GP to take note that something wasn’t right , so making sure the GP knows everything is bound to help in some way !!

If you ever want a chat I’m always here ! Xx

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Aw thank you so much for your kind, understanding and reassuring words. I am so sorry to hear that you are going through all of that!

Thank you so much for your lovely offer, same goes for you! Hope you start to feel better in the future XX best wishes x

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Yes dear, please do tell them. You cannot let the concern of letting someone else down interfere with your health and ability to get the best treatment. This is one of the issues with this disease, it is so personal some have a hard time being fully open and honest.

Like all the great advice from ladies above, you can make the opportunity to discretely disclose this. It is super important because say you declare pain in one area and they find nothing, they could maybe realise then it is referred pain and know to explore another region.

Taking natural supplements and herbs has been key to my pain management.

Some specialists have pretty much said keeping things as calm and easy going in your abdomen and pelvis is key. Natural Calm is a high quality magnesium based supplement that really helps me (also with sleep) and as needed Valium (diazepam) which can also really help for some as well. Stay away from hard to digest foods (red meat, gassy foods) and I have really limited dairy, meat and practically no sugar, my how helpful. Also, check out pelvic floor exercises once cleared by your doctor, there is so much self care info on the net now.

Stay positive young one, XOXO

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Thank you so much for your kind advice! I am so glad I followed it, as like you said it is so important not to let embarrassment get in they way! Thank you so much for your advice I will certainly look into it.

Thanks again, hope you are well xx

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Hi.. my 18 year old has just been diagnosed with stage 1 endo on her bladder, we were lucky having fought for referral after referral, and she had her lap Monday.. you must be honest with the doctor and tell them exactly how you are feeling and where your pain is, my daughter had rib pain, back pain, all the classic symptoms but it took us 3yrs to get this far, no we know we can start to try to manage it... wishing you lots of luck.. be strong...xx

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