Don't know where to turn

I am 23 years old and have been suffering with crippling pain since I started my periods at the age of 15. I went to the doctors and there answer was to put me on the contraceptive pill which didn't help me. At the age of 16 I saw one doctor and she said it sounded like the symptoms of endrometriosis looking back now I should of got her to refer me but when she said the word operation I really thought that would be last resort so she said about taking two pill packets in a row which got me through for 4 years, don't get me wrong I was still in a hell of a lot of pain every other month when my period came along. Fast forward....I went back to the doctor when I was 21 and said I wanted to be refered as I can't go on any longer like this as it was getting worse. I got refered and had to have a ultrasound and a internal before they even thought about operating. Finally they decided to operate. After I had come round from the op and had something to eat, the surgeon come round with the results, the first question he asked me was had I had any previous surgery which I replied no this was my first ever operation. He was puzzled as he went on to tell me that my uterus, bowel, follipian tubes and overies were all stuck together and they burnt a lot of adhesions away but couldn't find any evidence it was endrometiosis but they fitted a marina coil anyway. which they said beforehand they would only fit if i had got endometriosis. I left rather confused since then I have suffered with constipation a lot. A few days ago i went to have my merina coil removed and the doctor was unable to removed it and I'm now having to be referred to have a ultrasound. I asked her about what actually they said it was so she looked at my medical records and it's down as 'endrometrosis??'

I just don't know where to turn to be honest it's made me feel like I'm hitting my head against a brick wall.

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  • Hi Laullix,

    It might be best if you contact 'Endo UK' who host this site. Just click on the link at the top of this page and you will get their website. There you will find links to talk to their trained advisors. Phone or email, but as it's a weekend you might have to wait a day or so. They are a charity, so it might also depend on how busy things are. If you are not in the UK, you can still email them, but remember that some of what we UKers say - on this website - may not apply to your health system

    First, endometriosis can only be properly diagnosed by a laparoscopy, which is what you had at 21. The scan and internal would have been to rule out other conditions - ultrasounds don't necessarily show endometriosis, or not all types. This 'lap' or simple op is also what you were probably offered when you were 16 - it sounds like she should have explained it more, as it is the gold standard for identifying Endo. My first one was just exploratory, and I was told I had endo, but it was 'mild' and that the pill would control it - which it did for most of my life until I had to stop at 50 and after that things got very bad, but fortunately the mirena coil worked then.

    Second, it sounds to me as if the surgeon who did the removal of your operation was maybe a gynaecologist who did not specialise in Endo. In the Uk there are special clinics called 'BSGE Clinics' where the surgeons are gynaes who are the absolute specialists in Endometriosis. They can recognise it in its several different forms, find it in the places that general gynaecologists don't know to look, and are more skilled in the removal of endo.

    If the mirena coil worked for you - even if not completely - I would be tempted to say 'stick with it'. But, you don't say much about how the pains - before and after the op and coil - compared. Also, when you say 'constipation', have your GPs ruled out other causes, and if so, were all the possible diet, exercise and medicine options tried, before you tried to have the mirena removed? I don't know if others on here have experienced actual constipation with the coil, but endometriosis itself can be responsible for much of the pain that is often assumed to be digestive pain - such as ibs, bloating, constipation etc. Much of my later life I'd been told I had ibs - with no clear evidence - but when I eventually saw a good Gynae, and had the mirena fitted, he said most of my 'ibs' was almost certainly the endo - and sure enough, it all went away. Obviously it may be different for you, but it may be worth pursuing the line that you need to be sure that all your endo was removed, and that it has not grown back. It can grow back quickly if not all of it has been completely and appropriately removed.

    Meanwhile, I wouldn't worry about the Dr not being able to remove the coil, they are tricky - especially if you have not had children. My GP removed mine earlier in the year, and although she's done 100s, we nearly didn't make it! Although it was a teeny bit painful, we ended up laughing, as we both almost cheered after all the yelps, grunts and contortions.

    Overall: I would talk to the Endo UK people. I would also read around on this site as much as possible, so that you can learn more about Endo, how it is treated, and different women's experiences. Also learn about BSGE treatment, as much as possible - versus general gynae treatment. There is a lot on here: loads of women - probably most - have bad experiences of endo, as many GPs and consultants don't know the best way to treat it. There is a protocol in the UK about women with serious Endo being referred to BSGE Clinics, but many GPs and Gynaes either don't know, or just don't follow.

    Also, I would look for posts on here by 'Lindle', who is a mine of info. She has started her own 'Facebook site about Endo. There was a link on here for it a few days ago, so search back.

    Hope this helps, sorry it's so long.

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