2 Cysts & a high CA125 test and now my Consutants are pushing me to have a full hysterectomy at 36, im feeling totally devasted!! :(

Hi Girls,

My Endo was diagnosed almost 20yrs ago right after i had my1st child but stayed pretty mild for the first 5yrs until I suffered a m/c and it was discovered i had a large endometrioma. I had pretty extensive surgery and they removed as much endo as possible as well as the large endometrioma which resulted in me losing a portion of my left ovary which was left pretty damaged. The surgery was a great success and left me pretty much pain free but it did affect my fertility so it took us 10yrs of treatments before we had our son.

I hadn't had any problems at all until Feb this year when I went out to the supermarket and began to have the most awful pelvic pain and the staff had to call an ambulance. The ambulance crew said my blood pressure was through the floor so i was rushed to our local A&E dept where i was admitted to the gyn ward and was told my white cell count & CRP level where through the roof and that i had Sepsis. After many scans and xrays they could not find the source of the infection but the ultrasound did find 2 endometriomas (1 on each ovary) but after days of tests the source of my infection could not be found so after a week of IV antibiotics i was allowed home.

Two weeks later I went back to the hospital to the gyn clinic discuss what had happened and they said that they think one of my cysts had bled out and caused an infection but they couldnt be 100%, but i was scanned again and they told me one of the cysts was now grapefruit sized and the smaller one was around 3cm so they arranged a laparoscopy for me for next month to have them both removed, so before i left the clinic i had a load of bloods taken which they said where routine to check i was completely clear of infection before my surgery.

Two days later i received a phone call to say that the surgeon doing my lap felt that the damage to the left side was so extensive it would be best if i would agree to have my left ovary & tube removed along with the 2 endometriomas, i told them i wasnt happy with losing my ovary as we were planning on trying for another baby this year but after some convincing that we could still conceive with just one ovary i agreed.

A few days passed and just as i was coming to terms with the new surgery plan i receive yet another phone call to tell me one of the tests they did was a CA125 test which had came back high so they had cancelled my surgery and ordered me a CT Scan instead. I had the CT scan 2 wks ago and got a phone call on Monday to tell me everything was fine on the scan and that my surgery was back on for next month.

But then yesterday I get yet another call to tell me that my surgery has been cancelled again because my case went to a meeting on Wednesday and the specialists looking at my CT scan said they wern't happy and want me to have MRI scan now before surgery, so i then asked how long im likely to wait on my surgery now as i am getting fed up waiting and just want it over with but the Dr just said "oh we will discuss it more after the MRI scan results because i think the specialists want you to have a full hysterectomy now!!".

I almost took a heart attack telling her that I didn't mind losing one ovary but my surgeon had told me last week my fertility could be increased for the 6 months following my lap so we were actually planning to start trying for another baby right after my surgery. She just said "well lets just concentrate on having the MRI done and see what the specialist say".

I am just feeling so devastated today that 2 cysts that are giving me no pain at all can lead to me needing a total hysterectomy :(.

Sorry for rambling I just feel like everything has suddenly been taken out of my hands.

Tracyx

6 Replies

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  • I am going through almost the same as you hun. I have endo clinic Monday to let me know when my op for 7cm cyst removal endo removal and part of bowel removal will be?was told 3 months in oct? I did not even know what a ca125 test was or that I'd had one until I got a letter from hospital I googled it thinking it was results for early menopause test that I asked for cause of flushes and sweats (I'm only 38) and of course panicked cause I found out what it was for! I will pm you Monday and tell you what they say this time..... I've been suffering since 15 I've got a daughter so if it helps hysterectomy it is??? ;0/

  • I think this is indicative of the poor communication with patients you often see. It's not right that you should be told almost as an aside that some specialists might possibly want to give you a hysterectomy. This is a major, life changing operation and should be something you discuss rather than having it dropped on you. I also found out about a ca125 test from a letter and then googled it - also not right.

  • I was in tears went to my gp with letter asking about my ca125 level? He said "yes I wondered why they have done that test?!!! That's all he said??? That was 3 weeks ago I've been waiting till I c endo dr tomorrow so fingers crossed? X

  • I would take comfort from the fact that your surgical team is being thorough in asking for an MRI before the op.

    You are on fast track for surgery it seems, due to the complex cysts + CA125, this does mean there is a tiny risk of ovarian cancer. And because of that you get the benefit of your case being assessed by oncology gynaecologist teams and in the vast majority of cases as we know - this is just endo.

    To be a higher risk of OC, you would be post menopause (age 55+) or have the brca1 or 2 gene inherited from a parent, and there is likely to be more evidence in the family history of early ovarian and breast cancers in your immediate family to warn you that it could be an issue.

    If there is no brca history, and you are still some way of the natural menopausal age then it's a really really tiny risk of OC.

    Which means most likely it is endo - and as you already do know you do have endo, then relax about the OC and take advantage of being on faster track to surgery than ordinary mortals have to go through.

    they will have mentioned a hysterectomy as a possible outcome of the surgery because at this point they won't know for sure. they are not pushing you to have it, but rather warning that it is a possibility if biopsies do detect abnormal non endo cell growth anywhere or the scans show something else is amiss.

    I was fast tracked too- like yourself two cysts one much bigger than the other and a raised CA125. The smaller cyst was leaking, had previously exploded and then refilled.

    I had a lot of biopsies done all came back endo - except the smear test on the cervix which I had done in the op -and that did show some cell changes.

    the long term upshot of that is smear test recalls every 6 months instead of every 3 years.

    There could be an issue with an ovary being swamped by a cyst growing round it as I had. this meant the ovary was useless and it was removed. Without that there was no need of a fallopian tube. it had been healthy but too was removed.

    I did not lose my uteruses (i have two of sorts), the ovary on the otherside was in a much better state to be saved, cleaned up, detached from adhesions and put back where it was supposed to be.

    I also had a mirena installed in the uterus (which is deformed -and the reason why no pregnancies) but to all intents and purposes I can still get pregnant in theory. I musn't, and the mirena is doing a grand job of stopping my periods.

    The surgical team need to be told that you have not yet finished building your family, or at least another pregnancy is still a goal.

    It may not be practical to save both ovaries, and it may be that both tubes are already compromised anyway, so if that is the case, and your scans and MRI perhaps hint of adenomyosis, hematosalpinx or hydrosalpinx too then having a hysterectomy is going to be the best option for your long term wellbeing, they will always try and save one working ovary if it can be saved, so you don't end up on HRT for years and years.

    Please try not to panic and to wait and see what the MRI result tells the surgical team.

    armed with that much more detail, they will be in a better position to discuss what they want to do in surgery, plus what your priorities are as well. You have to sign a consent form before the op, and you can add anything to it that you want them to be aware of.

    e.g. preserve fertility if at all possible.

    In my case knowing i shouldn't get pregnant - i had no problem at all in consenting before the op to the removal of the left ovary. I'd had months of agony from cyst problems on that side and it was heavenly relief to wak up after the op and not be in pain on that side. I don't miss the missing parts one bit. Infact I am thrilled to have one half of me pain free.

    The existing ovary side has had a burst cyst since the op, and now has a current stable and calm cyst on it. not leaking and causing that kind of pain. it still gives me the odd days of gyp but nothing that pain killers cannot zap.

    It is just guesswork to say one of the specialists wants you to have a hysterectomy, it could be that one of them has spotted a problem that would be resolved by a hysterectomy. It would be highly unlikely to be cancer, but nevertheless, if the MRI confirms his suspicions of whatever condition it may be, then it is something they will explain to you and discuss what you would prefer to have done to resolve it if there is a choice.

    here's the website for adeno (adenomyosis) - it gives you everything you need to know about adeno if you are discovered to have it. adenomyosisadviceassociatio...

    and while a hysterectomy will cure you of adeno by removing it entirely, you may decide that you don't want to put yourself through that as yet. If they find something else - then write it down and come home an research it.

    There are some fallopian tube conditions mentioned on the following link

    emedicine.medscape.com/arti...

    There are several pages of uterus conditions to read through on

    medicinenet.com/uterine_gro...

    It may be something and nothing. having the MRI will help to inform you and the docs before the op, but there is also no knowing for certain till they get inside you and see what really is going on in there.

    i appreciate there is a shock when you are suddenly presented with the realisation that your fertility prospects are not what you hoped they would be.

    You can imagine my shock to discover that yes i can get pregnant - but musn't. There just ain't enough room in what two sausages i have instead of a regular womb shape.

    Good job i hadn't conceived prior to that news or i may not be here at all !!

    You do have two kids, which is a lot more than many ladies with endo have, and you don't yet know for certain that it is curtains, there is still a possibility that you may yet have a 3rd.

    if this really is it, then expect the shock to turn to anger and grief and dispair and the entire gamut of bereavement feelings which you will go through, and you will get through in time, and you will cope, and come to terms with it in the end.

    I have been through it myself and infact to some degree every woman with periods will have to adjust to menopause at some point whether natural or surgical. It isn't the end of the world - just a change in planned direction, and if you give it thought and plan for a back up way of life then it will be all the easier to come to terms with sooner.

    fostering or adopting may be an option, Surrogacy , or bringing in a beloved pet to the family can be an excellent way to fill a gap and provide much entertainment and give you heaps of unconditional love back.

    you may decide that in lieu of having more children of your own, you begin to work with other kids, in clubs brownies, scouts after school clubs etc and helping out in playgroups etc.

    There are a lot of kids not getting the parental support and care they need in their own homes and some are pretty much full time carers and have little in the way of fun, so there is demand and plenty of scope for helping to raise other kids without having the full time commitment of a new one of your own.

    Very best of luck, it is a worrying time understandably, but there is a lot you can do to research as well as looking for ideas to occupy you if it turns out you do end up having a hysterectomy.

  • Hi Girls,

    Thankyou for all the replies its a great feeling to know im not alone :).

    Lolaloo i hope you get some answers tomorrow,its all the waiting thats the killer.

    DrWatson i totally agree I was told about my high CA125 test on a call to my mobile while i was out shopping, i just went out into my car and burst into tears i was in total shock as OC had never ever crossed my mind.

    Impatient your post was spot on, at the minute i have a 3cm cyst on the right and a 8cm cyst on the left, the surgeon who was doing my surgery phoned me on Monday and said he feels my larger cyst has totally swallowed up my ovary to the extent it wouldn't work even if by some miracle he managed to remove the cyst which is why he said it would be easier just to take everything away from the left side which I did agree with as my left ovary was damaged years ago when they removed my last endometrioma so its probably for the best. So his plan was to take away everything from the left then remove the 3cm cyst from the right and clean up any adhesions to help preserve function on the right side as much as possible, but he did say without seeing inside he couldnt make any guarantees as he could get in there and find the right side could end up being as bad as the left and may also need removed. I did agree with everything he said and told him even though id be heartbroken I could accept losing both ovaries if it was done as a last resort, if he opens me up and finds out conception would be totally impossible then it would make the decision easier to accept.

    I was totally happy with the plan we had in place then i get the phone call on Thursday from my Gyn Clinic Consultant to say my surgery was cancelled and i was having a MRI instead, so i just asked "Is that to give Dr *** more information before my surgery" and she said "well it might be another surgeon doing your surgery now because the panel think a hysterectomy would be better". I very quickly let her know i wasnt happy with the new plan so she just said to wait until after the MRI and we could discuss it again, I was just so annoyed that someone was making such a drastic decision for me even before id had the scan.

    If i have the scan and it shows up anything worse than Endo, or that my ovaries are both destroyed with Endo then of course ill happily consider a hysterectomy knowing its the best option but not when all i have is 2 cysts that are giving me no pain at all at present.

    They have promised me my scan will be within the next 2 weeks so all i can do now is wait which is killing me x

  • Do let us know how you get on and what decisions are made. We are here if you need to quiz us on anything or have a rant and rave about the wait.

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