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If it's not endo, what is it?

(11 Posts)
Liska Mon 14-Mar-11 17:02:47

I've had seriously heavy and painful periods my whole life, as well as bowel problems at the same time. I've dealt with it by running my pills together, but when dh and I wanted to conceive (I was 38) I spoke to a doctor about possibility of endometriosis. She said it sounded pretty classic, but I should try and conceive first before considering a laporoscopy. Fell preg straight away, hurrah - dd now nearly 4. Been trying for no. 2 since June 2009, with no success, and suffering more and more each month - it's affecting my health in general, my social life, my work life and my ability to charge around with dd. Finally had a laporoscopy on Friday, to be told I don't have endo. Great news as far as fertility goes - tubes aren't blocked so we can keep trying. But I don't know what to do with the knowledge that I will still have to go through hell each month. I want to cry just thinking about it. So anyway the question is - if its not endo, anyone got any ideas what this could be?

hendriks Mon 14-Mar-11 17:43:47

try feroglobin capsules by vitabiotics and takeomega3 high EPA for the inflammation - my doc also prescribed merberverine re my bowel problems / as my stomach was always swollen

heavy bleeding is a condition in itself and makes you feel really run down my hair and skin were really affected as well as that I was quite depressed and tired all the time - i feel so much better now

VivaLeBeaver Mon 14-Mar-11 17:44:44

Have they done a scan to check for an fibroid?

Liska Mon 14-Mar-11 18:01:59

They found small fibroids on the lap (they showed me the pics, which was weird!)but said they are too small to be any bother, so no plans to treat.

Thanks for the tips hendriks - I take super strength Evening Primrose, which helps a bit, but have stopped just in case as it's not advised during pregnancy. I'm also prescribed Tranexamic Acid for the bleeding, which makes it a bit more manageable, and Co codamol for the pain. Problem with the latter is that if my period falls on a work day I'm either in too much pain to work, or off my face on the painkillers (which don't kill it completely anyway).

It's the pain that I don't think I can cope with anymore - last month it was like being about 3 cm dilated. I'll def try the feroglobin for general strength and stamina - that might help stop me going down with whatever bug is flying round every month!

kuckingfunt Mon 14-Mar-11 18:16:02

I have endo and am afraid to say that it took 4 laporoscopy before they diagnosed it. Each time before I was told I had no endo, despite having horrendous periods and pain every month.

Sometimes it is missed on a lap depending on where it is. In the end I got a referral to a well known endo specialist who did a lap and found it.

The pain is awful, I feel for you there. I was passing out every month with it.

Liska Mon 14-Mar-11 18:23:42

Thanks kf (great name btw), and loads of sympathy to you, too. Strangely, your post is encouraging, because at least it gives me something to take to the doc. I think in the lap they were specifically looking for causes of infertility and concentrated on blocked tubes - I'll keep battling!

kuckingfunt Mon 14-Mar-11 20:01:18

Thanks Liska grin

Yes, it could be anywhere, it could be on your bowel and missed on the lap, especially if they were looking specifically for blocked tubes and causes of infertility.

Whereabouts are you? Wondering if I know a good gynea in your area that you could try and get to see.

Also, take a look on www.endometriosis-uk.org/onlinecom.html - lots of information there and probably lots of ladies who have been through the same thing.

It took 9 years in total to diagnose mine, it is sometimes very difficult to get a diagnosis for endo.

Liska Mon 14-Mar-11 20:48:52

I'm in Oxford - and I was at the John Radcliffe Hospital, so I thought I would have got someone pretty experienced, tbh - but any recommendations much appreciated!

kuckingfunt Tue 15-Mar-11 12:20:03

Really?! I am also in Oxford!

Although I eventually travelled to Manchester to see a gynea - he is well known for dealing with endo and has an excellent reputation. I hate to say it but I wasn't that impressed with the John Radcliffe - they missed my endo. They may well be different now - my experience with them was at least 5 years ago so they may have a good team there now. If you look on the website I linked you may find some good reviews for the John Radcliffe.

AttilaTheMeerkat Tue 15-Mar-11 14:28:05

Hi Liska,

You have my sympathies as well.

I would concur with the other posters. It could well be that they've missed it; also endometriosis deposits can have several different appearances when looked through a microscope. Its not always "typical" in appearance.

Lesions have been variously described as looking like:-
powder burn spots (dark speckles)
brownish discoloured peritoneal membrane tissue
bruise like areas
raised, red superficial nodules
red-blue invasive nodules
fibrous white nodules
raised, glossy translucent vesticles
white pearly thickened patches
red, blue or chocolate coloured ovarian cysts
congested superficial blood vessels

Expertise in lap is needed to classify lesions correctly. Research shows that a surgeon's ability to recognise subtle lesions increases with experience.

(FWIW my endo was not cited in the fallopian tubes, it usually is cited elsewhere like for instance the instestines, pouch of Douglas, back of uterus, bladder, rectal area. As you can see it can be pretty widespread).

I would seek a second opinion as a matter of course from a consultant gynae. Endo often requires treatment from a gynae with a specialist interest in it.

You will need to be persistant in order to get answers. Pursue this further.

www.endo.org.uk is a very good website as well to read.

abchello Wed 11-Nov-15 09:27:47

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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