Lap results- tumour? Terrified! - Endometriosis UK

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Lap results- tumour? Terrified!


Hi all, got lap results yesterday. My womb is almost split in 2, the right side he referred to as a tumour, very large, with a smaller tumour coming off it which is stuck to my bowl. Just wondered if anyone else had anything similar?

Consultant didn't know what best way forward was and seemed reluctant to say until have a urogram and MRI. He seemed a bit stumped, but I asked if he'd seen this before and he said yes. I suppose every case is different. I also have extensive endo which at some point a total pelvic peritoneal excision will be done to remove (he specialises in this) but need to get to bottom of tumours first. To be honest I'm very scared and wondered if anyone can help ease my mind? Have more questions since coming out!

3 Replies

It's called a Bicornuate Uterus - welcome to the club. There are at least half a dozen on this forum. me included.

It does make us more suceptable to having endo.

It is rare, but not that rare at the same time - but it can mean cobblers chances of carrying a pregnancy to term which is the sad news.

Very much depends how early in your foetal development the split got stuck.

Every woman is created with just the two fallopian tubes at first then as you develop as a foetus, at around 8-10 weeks stage or thereabouts the two fallopian tubes merge to form the womb. If that process gets interrupted in the weeks of development - it gets stuck partially formed.

And this can be be due your mum being very ill at that time while carrying you, it could also be because she inadvertantly took medication which halted the development.

Don't be too surprised to find other abnormalities inside your body too that stem from this period of your own foetal growth.

I have a right kidney down near the right ovary - called a pelvic kidney.

My gall bladder was deformed too. The Liver is enlarged normally. Quirky thinks inside you have no idea about - but they make for interesting medical cases.

Despite the deformity - and losing one ovary and tube to endo surgery, I have a mirena coil inserted in the larger of my two halves, and it works and has stopped my periods which is fab.

However getting mirena installed into the correct half requires a general anaesthetic and the surgeon using ultrsound to position the mirena correctly - can be done but not many surgeons in the UK have the experience to do the procedure. I know of two by name who have experience of the procedure.

One in the South East and One in the Midlands should you want to go down that road.

And I really recommend that you do.

Depends on the degree of deformity - some bicornuates are still capable (just about) of holding a pregnancy in their womb(s), some are clearly not and it wouldn't be safe for mum or foetus to get pregnant.

Basically you have two undeveloped fallopian tubes rather than one womb. Or two sausage wombs, not a triangle .

From your description - yours may even be classed as Unicoruate, if one side is considerably bigger than the other.

There are various syndromes that can cause this under development - one is MRKH - Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. Which seems to be in the news of late.

Another in older women is DES drug - they are called DES daughters.

You can look both terms up to get a better idea.

Very easy for these deformed wombs to get stuck with endo adhesions and cause period problems and endo.

But apart from that and the pregnancy complications - there's nothing particularly different to what a normal woman would go through. And we are very interesting subjects for medical people.

They don't see too many of us in a life time.

The sonographer lady who discovered mine actually squeeled when she saw mine. the 1st she'd seen outside of text books. "oooooooooooo A heart !!" she squeeled at me, then explained ever so briefly.

Yes it is a shock - and it does take some adjustment to how you think about yourself, but we are in a special club of uniqueness.

Thanks for your reply, very informative! He did say that the right side was completely blocked, meaning if I got pregnant then it would only be in the left, healthy side. But if I do have the right side removed (not sure if that's an option yet until other tests done) then it would leave the left wall very weak and probably I wouldn't be able to carry as the wall would split.

I did have the mirena fitted 3 yrs ago, which was now understandably very painful! It did it's job for about 2 yrs, but endo symptoms started coming back and sex was just a compete no go so my dr advised i have it removed, which I did in august. I also wanted to start trying for family. Pain got too bad so started 2nd lot of investigations as wanted to see what state it was all in as it was 13 yrs since original endo diagnosis. Funny how they didn't see the "blockage" the first time round, they just diagnosed endo. Thanks for the links.

Hi "Shellbell" and "Impatient",

I came across this post, and read with interest. Impatient - you always provide such thorough and informative replies...

I was interested quite simply because I have had a Doctor say this to me in the past. My uterus was described as tilted backwards (retroverted) and heart-shaped (septate, I think). However, nothing was really explained to me, and the effects on my potential fertility were certainly NEVER discussed, or made known to me. Mind you - this DID take place whilst I was still under the "care" (I use that word extremely loosely!) of my old Gynaecologist (the one who got my diagnosis wrong, missed treating me, did not turn up for appointments, mislaid diagnostic reports, etc..)! Now wonder little got explained to me - his incompetence and malpractice was stupefying!!

I have struggled, for years, to make the decision as to whether I attempt to try and start a family. A lot of my indecision has simply been because I never really knew what was at the root of my fertility problems and difficulty conceiving. I was not diagnosed for ages with Endo, despite having clear symptoms, and despite the fact that two other Consultants sent letters to my Gynae suggesting Endo could be causing my symptoms. I was told, in passing, about my uterine problems, but nobody explained anything clearly. I have wondered, for a long time, what effect (if any) all my Gynae problems might have on fertility and pregnancy... however, none of the Gynae Consultants I have seen have ever really explained. If anything, I've just been told - is passing - as though it was of more intrest to the medical person, than it was to me. I've sort of felt like a "medical anomoly", as opposed to a person who had genuine concerns about fertility and Gynae issues.

Do you know what REALLY gets me? It's the fact that I never feel I've been told the full truth of what is wrong. I'd LOVE to sit down with a Consultant and have them go through everything with me. Explaining my uterine problems; explaining my Endo; explaining the possible impact on fertility and pregnancy. Rather than just briefly telling me (usually when I am still groggy after anaesthetic and surgery!) in very little detail. Sometimes it feels like there is "something to hide".

It fascinates me that you suggest that certain medications a mother takes can cause defects in foetal development. I have several CONGENITAL defects - septate uterus, hypoplasia of facial sinuses, talipes, underdeveloped left eye... I also have a Bipolar mother who I believe was taking something like Lithium while pregnant with me. I have often asked myself if this could have lead to the problems I have now. I also ask myself sometimes if this is something the NHS would want to hide from me.

I just WISH people told the truth. This is MY body, and MY life, and anything affecting it is something I have a right to know about. Women NEED to be given FULL information in order to decide on the best course of treatment. Even if we have a "rare" defect, or a condition that is not very well known about - we NEED to know - in FULL. What it is and what it does.

Thanks again to both of you - this has helped address some of the confusion I have felt for YEARS. I just wish that medical people could understand what it is like to have something wrong, but not to fully know or understand what it is, why, or what problems it may lead to. Patients have a right to information - without it, they cannot make informed choices.

Thank you,

E. x

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