An interesting non-endo stor

I thought I would give you all an update because I have mentioned my daughter on here before and we have now had the operation with Mr T; all was not as it seemed.

My daughter had a brown discharge for over a year and during this time she went to the doctors who prescribed the pill....there's a surprise. After 6 months of being on the pill and still having the discharge she went back and they sent her for a scan. More delays and in March she had the scan with the results in April.

We went through a very stressful time when the NHS consultant said she had possibly stage 4 endometriosis and she also had 3 chocolate cysts on her ovaries. She needed surgery, they would try by laparoscopy first and if not possible they would proceed to cut her open and do whatever was needed. This may have involved losing ovaries.

That was it. No mention of how she would deal with this; she was only 20 and was risking going into surgical menopause. As her mother there was no way I could see this happen.

I read about a guy who is a God known as Mr T. He is not referrable by the NHS and we would have to pay £10k for him to operate. I doubt I need to tell many of you about him. He is known of world wide for his pioneering techniques.

So, on Wednesday my daughter was admitted to hospital in Halifax. They did pre op stuff including pregnancy testing. Her operation was scheduled for the next morning. We were staying in a nearby hotel and I got a phone call from her the next morning. The test had proved positive, twice. They thought she was pregnant and in denial to the extent that they were almost rude to her (they have since apologised). They couldnt do the surgery until they investigated further. She had more blood tests and a scan.

When she came back from the scan I couldnt believe my ears; I am angry and confused. They found no evidence of these cysts. They found a couple of smaller cysts but in different places. Her ovaries were fine and clear of anything like that. What they did suspect though was a congenital disease. Surgery was booked for the next morning and we werent quite sure what he would find. The kind of surgery he was doing was not what we went to him for but having said that, thank God we went to him because he was able to do all he needed to do laparoscapilly(?)

Basically she has a congenital disease that give her 2 wombs, 2 vaginas, possibly two cervix but he couldnt find that. The cysts were not chocolate cysts and they were nowhere near her ovaries. The one near her fallopian tube was advanced and meant he had to remove the fallopian tube. He was able to preserve the ovaries and I think connected both of them to one tube?

No sign of endometriosis.

What is going on? What would the NHS surgery have made of the situation which Mr T described as "technically complicated". Would the NHS have seen the complicated mess and just given her a hysterectomy?

Because of their diagnosis I paid £10k for an operation with a specialist that we didnt need. As I said, I do not begrudge this atall. She couldnt have been in better hands and maybe their misdiagnosis led me to this special surgeon.

Im not sure what to do with all of this though?

4 Replies

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  • Just to let you know- your daughter isn't alone, there are at least half a dozen of us on this forum with a mullarian deformity of some degree like what your daughter has. And it isn't a disease, it's failure to grow normally at the foetus stage, so she has had it all her life.

    I was over 40 years old before mine was discovered and only when i had my 1st trans-vaginal (internal) ultra sound) did that become obvious. I'd never heard of such things, and though once thought very rare, with technology advancing in scanning and surgery it is lot more common than it was once thought to be, simply because it is easier to spot these days. The sonographer squealed Oooooo and then said I had a bi-horn ... which is another term for bicornuate uterus. She'd only seen them in books, and since then on my many visits to sonographers, they are always really interested because they don't get to see too many in a life time of scanning women.

    Basically we all start out with the split of two vaginas, cervixes and fallopian tubes. No uterus.

    Then as the foetus develops they merge from the vagina coming together to make one vagina, moving up to the cervix, then the two fallopian tubes form a uterus by coming together.

    Just that in some of us at around the 10-16 week stage of being foetus, something causes the growth and joining up of the two sides to halt and they remain divided from there on in.

    In my case, my mother was taken seriously ill with Malaria and nearly lost me (the pregnancy). So my deformity can be accounted for from either the illness or the drugs mum was exposed to at that critical time.

    In addition, I have a right pelvic kidney (which is right down near the right ovary,) I had a very deformed gall bladder since removed , and an oversize liver. None of this was picked up at the same time.

    Just over the years gradually as one thing went wrong after another more and more quirky insides were found.

    Starting from the Kidney which was found in the wrong place when i was 15 after my 1st bout of kidney stones. After that the gall bladder and liver had problems so their deformities were spotted on scans etc.

    And much later on my rather messed up female plumbing also got spotted.

    All of which would stem from the interruption to my foetal development. On the outside perfectly normal shaped in every way, and there was no indication at all that things were messed up inside.

    The following website has rough diagrams of the various categories of mullarian deformity.

    latinosexuality.wordpress.c...

    Mine is E the bicornuate , I have two cervix, two sausage shaped uteruses though really they are just fat fallopian tubes, but the vagina is just one at the entry point and splits further up.

    Your daughter sounds like she is probably diagram F which is Didelphic which is completely two separate vaginas and all the way up.

    I've had the left side , tube and ovary removed as they were wrecked by endo and obsolete.

    The remaining side is not of the shape and size to safely have a pregnancy so having babies if off the agenda, (I am too old now anyway - and it is just luck i never fell pregnant in the intervening years as it would have put my life and the pregnancy in jeopardy - I know now, but certainly didn't for a mighty long time)

    BUT with the right surgeon I was a guinea pig for having mirena coil inserted during a surgery, in the remaining side and it has done a fantastic job stopping pains, periods and PMT, and lasts up to 5 years.

    The mirena certainly cannot be installed in split set up in the normal way, it needs to be guided in to place using ultra sound etc.

    There are a couple of other ladies on the forum with the same problems who have also managed to have mirena expertly installed. So if your daughter decides one day to have mirena put in, then just PM me and I'll let you know of the two surgeons that I know who are already familiar with doing this procedure.

    Most are not !!

    But despite the mirena manufacturer stating it should not be used in split wombs, it can be done, but only with expertise and a general anaesthetic (which is mercifully the best option anyway) and it can be done on the NHS.

    Pregnancy is a tricky one. In theory there is no reason why your daughter shouldn't be able to get pregnant on the side with the remaining ovary and tube. The surgeon will not have moved the unconnected ovary, so unless her deformity is really obscure it is unlikely it is anywhere near the remaining fallopian tube, but the happy ovary which still has access to a fallopian tube will be quite capable of sending an ova down to the uterus on that side in the event your daughter does want to try for a pregnancy.

    She may be advised that the situation is too high risk (as I was) but there are plenty of cases where women have successfully carried a pregnancy when having a 2 womb set up, and cases of twins one in each side.

    This from wikipedia (and I remember Hannah's story making all the news papers at the time)...

    Triplets !!

    "Hannah Kersey, of Northam in Devon, gave birth to a pair of identical twins from an egg that implanted into one womb and then divided, and to an infant from a single egg that implanted into the other womb. This was the first known birth of viable triplets in a woman with a double uterus. It is estimated that the possibility of such a birth is about 1 in 25 million. A triplet pregnancy in a woman with uterus didelphys was reported from Israel in 1981; one baby died in utero, and of the remaining babies, one was delivered at 27 weeks gestation and the other 72 days later. "

    It will certainly be classed as a high risk pregnancy should your daughter one day decide to try for a family of her own. It is not a genetic deformity, and cannot be passed down, it is a developmental deformity.

    She needs to declare the didelphic uterus whenever she is sent for any procedures down below, like smears and swabs and scans.

    It need not be any issue at all in having sex with a partner, and many women do not find out they have this deformity until they actually end up pregnant and have their 1st scan. I certainly didn't have any problems having sex, but found that any speculums being opened up inside was sheer agony, whether that was down to severe endo or the deformity I really don't know, but if your daughter finds such exams are far too painful she is entitled (as we all are,) to have anaesthetic.

    The NHS don't advertise the fact but it is our right to ask and to get help when required, because it is too painful otherwise.

    Regarding the cysts.... the funny thing about cysts is that they do come and go and one scan can show whopper cysts and they gently deflate and disappear. A follow up scan is normally done a couple of months after an initial scan to check on progress, as the vast majority of ovarian cysts do go all by themselves.

    Endometriomas or blood filled cysts can deflate, can explode (ouch!!!) and can just keep getting bigger, they can deflate or burst and refill up again, so it is no surprise that cysts that were once there are now gone, or that cysts that were seen in one place may have moved as some kinds are tethered on a chord, much like a balloon on a piece of string, and they can be in one location on one scan and have shifted somewhere else by the next scan.

    They only need removing if they are a nuisance, leaking painful or just continuing to fill and expand.

    So don't be too shocked at the change in cyst circumstances ..that is actually the normal course of events rather than the abnormal.

    And regards a hysterectomy - not at all. As I said my set up was not identified till I was in my 40's and I already knew my uteruses would not be used for a pregnancy so to all intents and pusposes my uteruses were obsolete.

    At my surgery, which was meant to be keyhole to remove cysts, it turned out to be a lot more complex - in part because of the deformity the bowel and bladder were in fact stuck together as well as endo everywhere etc, so my op turned in to an open hole laparotomy, and even then, they only took out what was essential to remove.

    One ovary wrapped in a leaking cyst and the left side set up because it was no longer needed without the ovary.

    I wouldn't have minded the hysterectomy, but the surgeon said he would never do an unnecessary hysterectomy on anyone under 50, and would always endeavour to save at least one working ovary so that his patients didn't have to spend decades on HRT. That is the NHS policy now in place, to preserve pelvic organs where possible.

    Living with a didelphic uterus does not have to mean much adjustment to an ordinary life.

    There are issues with using tampon, depending on which side vagina the tampon ends up in, the other side will be free to bleed and there really isn't great deal of room to use a tampon in both vaginas, so the best solution is to use a tampon for one hole and a sanitary towel for the bleeding from the other while on periods...or go for the mirena which stops periods for up to 5 years...... but needs expert installing.

    Perhaps in the meantime the alternative to try is nexplanon or implanon, the arm implant, which avoids messing with down below, and can stop periods up to 3 years at a time. Better to not have periods than be juggling with which vagina has the tampon in it if you get my drift.

    If your daughter has any questions on this mullarian deformity please don't hesitate to ask on here, because there are half a dozen at least, of us ladies with similar issues. Those with deformities are more likely to have endo, so it is really great news that your daughter doesn't.

    It is roughly 1 in 2000 ladies who do have mullarian deformities, as we have 7000 members, by rights there should be 3 of us, but there are certainly at least double that number.

    Use the search box and look for bicornuate Didelphic or didelphys and you'll see some of the previous discussions.

    I know it's a shock to the system when you 1st find out, and it takes some time to get your head around the news, but it really isn't the end of the world.

    Having kids is possible, certainly is by using a surrogate, and who knows where technology will take us in the near future. She is in a much better place to know this at 20, than I was in not finding out till I was past 40. Too late for any baby making options by then.

    We are special people, and believe me when your daughter mentions it at hospitals when having scans, my word do you get treated as a special case. I always end up having some fab conversations with the nursing staff when having scans, because they are so interested and they always want to have a rummage round, and so long as it doesn't hurt me, then I don't mind them taking longer with ultrasounds and exploring how things are positioned and what they look like.

    Have a google too, there are more and more websites appearing that deal with mullarian deformities and the associated issues. Wishing your daughter a very speedy recovery from her op.

  • What an empathetic and informative reply Inpatient. I am not the original poster but I am constantly astonished at the breadth of knowledge that comes up on this board and the support it can give. Thank you.

  • IMpatient -sorry must check.

  • Thanks for sharing numberone1, I had never heard of anything like that. Hopefully it is a really good thing that she has been diagnosed so young and will have good health-care from here onwards.

    I hope impatient's answer is really helpful for you both.

    Echoing what Pands has said above there is a lot of good information available on this board, and I personally have noticed how helpful and informative impatient is to lots of people - so thanks on behalf of us all for that! God that sounds cheesy lol!! ;-) impatient if you read this I'm not good at doing Sincere!! but I truly mean it! :)

    Best wishes to you and your daughter! xx

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