Anyone on here with endometriosis or fibroids? Needing some reassurance please

Hey guys

I'm a newbie, so apologies if this is in the wrong place.

My OH and I aren't actually trying to conceive atm - our original plan was to move in together, get married in 2017, then start trying for a family immediately after. But then I got rushed to A&E with Ideainsane[/i] stomach cramps in April. I got referred to a gynaecologist. She suspects endometriosis, although there's an outside chance I could have fibroids as my Mum and my Nan have had them in the past. I've got a laparoscopy in a couple of weeks to do a proper examination and try to fix it, but I've been warned that if it is either endometriosis or fibroids I could have difficulty conceiving & be at higher risk of miscarriage.

I've been reading up on both conditions, and the stuff I've read recommends that women try to conceive as soon as possible after surgery, due to the risk of the conditions recurring. We're really not in a position to have children atm - we don't live together, I wanted to give up work until our children go to school and that would not be an option right now, we've already paid out deposits for our wedding and I don't know whether we'd be able to afford the balances if we had a child, and we've never been on a holiday together so we wanted to have at least one holiday abroad just us before we have any children.

I have anxiety issues anyway, and don't deal well with plans being changed - and this is a massive change. I'm terrified about the surgery (especially the idea of a general anaesthetic - I hate the idea that I won't know what's going on), work have called me for a formal meeting about my sick leave so the stress is making the pain & anxiety worse, and if we get news that there might be fertility complications then I don't know what we're going to do.

Has anyone else on here gone through this? Words of wisdom/reassurance would be greatly appreciated.

Posts

  • Argh I just wrote an essay in response to this, but it got eaten! I'll start again but excuse the bullet point style!

    I have fibroids and suggest you get a referral to a specialist asap for advice. My brief history as follows:

    Spring 2012: have general abdo ultrasound due to random pain found later to be IBS. Sonographer casually remarks I have fibroids. I ask GP re impact on fertility and he says unsure, more likely if I have painful heavy periods which I don't, but no way to tell. He didn't refer me for any further tests since I was planning a wedding but not TTC.

    July 2013: start TTC

    Aug 2013: BFP. Yay! Book in with midwife, fibroids noted but she says low risk still. Again not referred.

    Oct 2013: Miscarriage. Hubby and I devastated and I want answers. Were the fibroids to blame? Should they have been sorted before TTC? We have BUPA so I found a lady who is a UK expert on fibroids and got referred to her. More ultrasound and an MRI later, diagnosed with 5 fibroids, 2 outside the uterus, 2 in the wall and one sticking up like a mushroom inside the uterus. I asked if that caused the mc and she said impossible to know, maybe, but vast majority of mcs are chromosomal problems not physical. Consultant said to be on the safe side, best to remove the mushroom one, and scheduled me for an op in November. This was to be a hysteroscopic resection, so no abdo surgery, no incision in the uterus, and full preservation of fertility. In some cases she doesn't even use surgery, she has a machine that can zap them with ultrasound, but mine weren't suitable for that. Also important was that conventional fibroid surgery means no TTC for 12 months. This only meant a break for 3 months.

    Nov 2013: We couldn't decide what to do, didn't want to stop trying since I knew being pregnant again was the only way to get over the mc. Decided to keep trying and postpone the op until the new year.

    5th Dec 2013: BFP again! And that's where I am now.

    However, this pregnancy hasn't been easy psychologically. I was terrified I'd been stupid cancelling the op and that the egg implanted on a fibroid. Had a lot of private scans as a result. At 6 weeks, all shown to be in the right place, but at 10 weeks, the baby was being squashed by two fibroids. Ironically NOT the one that they had wanted to remove! By 12 weeks baby had outgrown them, but then at 20 weeks one fibroid had moved to block my cervix and I was headed for early labour or a c section. At 29 weeks (now back to NHS) that had cleared, and today at 35 weeks it's all looking Ok.

    Sorry for the long story, but it should give you some hope. A scan should be able to diagnose fibroids without invasive surgery, and as I mentioned above, the top specialists don't even need to operate conventionally in all cases. Yes I was lucky to be able to go private, but most if not all private consultants work for the NHS as well. I'd just have had to wait about 4 months. You have time to look into all this while the wedding is getting sorted, and make informed decisions about what you want done, and when.

    Feel free to ask anything else you want to know.

    Xx

    C

  • Hi MadamRed & welcome to MD. I don't know anything about either the two conditions you've mentioned but would suggest same as Barefoot, get a referral and talk your worries over with them once they've discussed a plan of action for you. Fingers crossed for you x

  • HI MadamRed

    About 6-7 years ago I started having really terrible pain during and after sex. It really was awful. I was referred for suspected endo and had a laparoscopy. The procedure itself was fine. All very quick and took about 1-2 weeks to recover. You will need a few days off work as immediately after I was quite sore (wasn't able for much beyond lying on the couch). It had all been pretty scary as I had just got together with my now hubby, was 28 and being told that if I had endo their advice was to start trying immediately as it gets much harder after 30.

    In the end I didn't have endo. I do have two fibroids but I have repeatedly been told that their location means they will have no bearing at all on fertility. Fibroids are, as far as I know, less likely to be problematic but it's really important to know what you are dealing with. In the end, after 3 years, I finally had my pain diagnosed as vulvadynia which is basically bizarre spasms of nerves in the vagina. So not like what you have at all.

    What I would say is have the surgery as it's the only thing that can diagnose endo. When to have kids is a big decision so I think I would just deal with the surgery first and see what comes of that before making any other decisions. Get the referral, get the health issue dealt with (not good to have that much pain) and then see what's going on.  You might turn out, like me, to be worrying over nothing in that regard.

  • hi, i got endometriosis before and couldn't get pregnant, i was so sad, i tried many ways, a lot of antibiotics, but didn't work. by chance, i know a tcm which is very good, i always don't want to get a surgery, for i think my possibility of pregnancy will be decreased by receiving a surgery, since wound will be left, fu yan pill is the tcm i took, after several months i was cured, without getting the disease again, maybe you would like to try it?

  • Hey! I just recently had my surgery to remove endo! They said the best time to try is within this next year.... up to 6 months is a good chance! It’s difficult for me to as our wedding is booked for October next year abroad so timing is everything at the moment. You just need to decide what you really want. 

    ypu could have a really mild form or an extreme case of Endo but try not to think about it too much until yoir op! It’s so stressful to think about worst case scenarios but donT stress! 

  • Hello bit of reassurance to anyone with this problem hopefully!

    i was diagnosed with stage 4 endometriosis at 20 and had a laparoscopy due to a cyst on my ovary that was the size of a grapefruit the laparoscopy was to remove the cyst and to do a bit of investigating  i was told the same the best chance of me getting pregnant was after the laparoscopy and the year following it , i was too young and was with the wrong person at the time, surgery went well and had the cyst removed but was told the chances of me falling pregnant were zero to none because of it being stage 4 endometriosis and was devastated to hear that at such a young age. Recovery from the surgery within 2 weeks and returned to work .

    i was told to go on the mini pill to prevent and help with the endometriosis.  i was on the mini pill for 3 years after this and then last year fell pregnant on it  and had a healthy baby girl this January who is now 6 months old sheer  amazement i took 7 tests to be sure as i was told there was little or no chance  ! They were shocked to see on my u/s that no endometriosis tissue had grown in the 3 years between my laparoscopy and my scans with my little girl were all clear uncomplicated pregnancy and straightforward fast birth and i have now just found out that i am now pregnant with my second 6 months after the first so please don't lose hope !

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