Advice please? :(

Hi there. I got diagnosed with "mild" endometriosis in 2011 after a lap, after a year of horrendous pain in my pelvis. The gyn and my gp said that because there wasn't much of it it shouldn't cause me any problems and I was treated with the pill.

It was okay for a while but my gp changed my pill last year to a different one that didn't interact with my Crohn's. Ever since then my pelvic pain has been getting worse and worse and I have been noticing blood after intercourse. I'm in agony all the time again but daren't mention it to my gp cos I know she will say it won't be that (she has done in the past) due to it being so "mild".

Anyone had a similar situation or can shed some light? Thank you x

5 Replies

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  • Your GP is just awful!!!! How can she say its not the endo when it's a known fact that you can have mild endo but severe pain, just like you can have severe endo but no pain at all.

    Also endo does tend to grow and spread so there is no knowing how things are now without another lap.

    I suggest you either get another GP or make this one listen, the way you are being treated is appalling, it's time to get tough and demand the care you deserve.

    Xxx

  • Thank you so much for your reply! :) my gp has been there for years for me through a range of things and I can't fault that but I think she's got to a point where she's like oh no not another thing wrong :/ which makes me scared to see her. Also because I have health anxiety I don't think she takes me that seriously, but this pain is very real! And I've read that too about mild endo causing severe pain and vice versa, think I'm definitely gonna have to get an appointment and if she won't listen speak to someone who does. Thank you so much xxx

  • Please change your GP. If you don't get the right support from your GPor don;t trust them to help you then you are on the road to nowhere.

    Endo can regrow if it was laseredoff but was infact growing deeper than the lasers reached, the underlying cells will be there still and be active and carry on as they did before. the next optionis excision or cutting out the deeper endo to actually remove it. Lasers and diathermy work well for shallow surface endo and as a 1st op that can be very effectinve in most endo cases of mild endo - but it certainly isn't the answer for every patient and if the pains start up again or never really went after that op then you will need more surgery.

    Another aspect is that any surgery and every surgery will cause scarring and adhesions which can stick organs together and cause pain. Your Crohns will also cause scarring and adhesions too, so it could be that the pains you are experiencing are a by-product of the Crohns rather than the endo, but eitherway your quality of life is greatly being impacted and you need this investigating and to do that you need firstly to be referred back to a gynaecologist.

    It is possible there is nothing ca be done, but that is not something your GP is qualified to determine.

    You should be under the care of an endo specialist gynaecologist who knows about endo and can hopefully provide you with solutions.

    bsge.org.uk/ec-BSGE-accredi... lsts the accredited endo centres and there is a separate page for the provisional endo centres awaiting accreditation. Find the nearest one to you and note down the details.

    Ask your GP or different one at the same practise to refer you to an endo centre and then see what the endo centre has to to say.

    If your own GP or another at the practise is not willing to refer you then you will have to either have a sit down strike in the surgery till you get referred (or take a strapping body guard with you to intimidate the doc) or move surgery - in which case look for one that has a GP that specialises in women's health issues as they are more likely to be aware of the symptoms and complications of endo and possible treatment options.

    the endo centres you will notice all have colorectal surgeons who know about endo, on their surgical teams. these surgeons will also be familiar with Crohns and Colitis affecting the digestive tract and can be useful to have on board as well. Unfortunately when you have more than one medical condition going on, it's all to easy to blame everything on one or the other medical condition and nothing gets done except you are passed from pillar to post or fobbed off.

    the fact you are bleeding after sex - and have endo/.gynae pains stillafter a lap means that something is still wrong with your system and needs investigating and possible treating to improve things for you if at all possible.

    be brave! be bolshy and pushy and don't be fobbed off.

    take moral support people with you (mum, dad or boyfriend etc) and demand that you are referred to the hospital.

    this situation is not going to going to resolve itself by ignoring that there is a problem. Best of Luck

  • Thank you so much for your reply, that was so helpful. Had a look at that website and there's a couple near me waiting for accredition so that's a good start! It's just every time I mention it it's just like nah it won't be that. Like you say with crohns it can be a similar thing that's why I've sort of left it but my crohns is under control at the minute and with the bleeding that's what's making me think it's endo related.

    Booked myself an appt this morn but nobody to go with me which sucks. I'll probably just break down and beg her to do something! I've been thinking I'll just leave it cos I'm that scared of going because I'm always at the docs for one thing or another but I've realised that's what they're there for. I did see a different doctor about pains a few months back and he was convinced it was endo not my crohns but it never got followed up they just treated the crohns and left it there.

    Fingers crossed she will listen to me this morning and something will get done about it but I'm not holding out much hope! Might use your idea of not leaving until they do something!

    Thank you again so much x

  • You are always at the doctors because you need to be, none of us go for the sheer fun of it and its about time the medical profession acknowledged the real and serious pain we are all in.

    My best advise to you if at all possible is to stay calm and very direct with your approach, explain that you are in severe pain and that you do not believe its tge chrones this time, calmly state the fact that you have followed her advice so far but the situation is getting unbearable and demand a referral to a specialist.

    Remember it's your body and you know it best xxxx

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