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Any advice greatly appreciated...

Posted , 6 users are following.

Apple88
Apple88

Hello...

This is the first time I've ever posted anything on here, but I've been following the dicsussions and advice for some time. 

I have had issues with periods for the last 7-8 years and have had MANY trips to GP, scans etc.  I have also tried different BC pills and eventually succomed to the Mirena coil, as this was the only thing I was being offered.  I had it in for 9 months, and hated it! Bled pretty much the whole time. 

Anyway, i've been back and forth again to the doctors, and had 2 more ultrasounds which now show 2 cysts of approx 5cm and growing and a hdrosalpinx blockage in my fallopian tube.  I was at the end of my tether so I paid to see a private gynaegologist, who was the fist person who's ever not fobbed me off!  She said it was most likely to be endometriosis, which I've been saying to my doctor for years, and has said that I need to have boths the cysts, my ovary and my fallopian tube removed (an oopherectomy I think!).  She will also do an endometrial ablation at the same time. 

I am releived but very scared! Even though I'm now back in NHS they've said that It may be in as little as 2-3 weeks time.  My reason for posting is that I really don't have much of an idea of what to expect, and how things will be afterwards. 

I was wondering if anyone had had anything similar, or experienced the effects of these procedure? 

Thank you in advance! 

0 likes, 17 replies

17 Replies

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  • bobbysgirl
    bobbysgirl Apple88

    Posted

    I've had cysts, fibroids AND endometriosis. Although they may be connected, I have never heard of endometriosis CAUSING cysts? My endo. was on my gut and caused horrendous stomach pains for 2-3 days every month. My GP and I knew what it was before the hospital got involved (they couldn't decide, thought it was a gut problem - EVERY MONTH for 2 days - dur!) Anyway, very long story short, I was put on the pill 12 month continuous and that did the trick. The cysts have shrunk on their own due to the menopause.

    I'm sure there are ladies here that have been through that Op and can advise you. But in my case, the hospital didn't inspire me with much confidence (hence the long story) so, as the cysts/fibroids were not really bothering me much (compared with the endo.) I had confidence in my (lady) doctor's advice - if it ain't broke, don't fix it.

    • Apple88
      Apple88 bobbysgirl

      Posted

      Thank you for replying. I couldn't take the pill - I've feel like I've tried everything and this is my only option. Haven't been diagnosed with endo but I guess I'll find out when I have the op.
  • Michellestar87
    Michellestar87 Apple88

    Posted

    Hello I've been diagnosed with deep end through mri,my cysts in ovary were in fact endomitriomas and a haematphinx in Fallopian tube bowel.and bladder affected too my periods are horrendous.i think a hysterectomy is my way out of it as 49 but my friend had a oophrectomy last month her name is snowbell on here message her she was in and out of hospital and

    Recovered quickly she had endometeioma on ovary and had both tubes and endo

    Scraped off everywhere.good luck xxx

    • Apple88
      Apple88 Michellestar87

      Posted

      Thanks. I like the idea of a quick recovery. I'm just worried as it seems to have gone from one extreme - being told there's nothing wrong, to suddenly having surgery. Hopefully it'll be okay.
    • Michellestar87
      Michellestar87 Apple88

      Posted

      You will be fine I think this is what they will suggest with me as right ovary and tube not healthy at all with endometrioma and haematphinx and oophorectomy.then hysterectomy at later date of periods no better xx
  • dobb34487
    dobb34487 Apple88

    Posted

    Hi Apple,

    Sorry you're going through this and it took going private to get diagnosed.I paid privately last week to get scanned quicker.Its sad that you've been fobbed off for so long.

    I had an Oophorectomy and both fallopian tubes out 4 years ago due to a large Dermoid Cyst with Bone in mangling my tubes.The surgery may be key hole,it's surprising what can be pulled out of a small hole! Any surgery going through your stomach muscles is painful for a few days after.You will also discharge and need pads.I know how you feel and I have to go through this again as another large Dermoid has grown off my remaining Ovary.I have hot flushes all day and night and bowel issues caused by it.The possitive thing is that they've found a problem and can start to fix it.Your better off not scaring yourself and deal with the surgery as it comes.You will feel better after the first week and hopefully will end up feeling the best you have felt for 7-8 years!I'm certainly hoping too smile x

    • Apple88
      Apple88 dobb34487

      Posted

      Thank you so much for your reply. It's reassuring to speak to people who've had similar experiences.

      When you had your surgery, were you working and if so, how much time did you need off?

      I really hope you can get some relief too with your current issues. 😊

    • dobb34487
      dobb34487 Apple88

      Posted

      Hi again,

      No I wasn't working as I'd been signed off work the year before after having major complications from another unrelated surgery.

      It depends on what job you do,be it physical,standing or lifting.I felt fit for nothing the first week then by 2 weeks you feel almost better but still have to be careful.Seat belts aren't comfortable for a few weeks after either,if you have to travel far to work.I think the average time off is up to 6 weeks.I had 2 small incisions on both sides and bruised up alot.Eveeyone is different and you might be feeling fit for work sooner.

      Thankyou,I'm sick of feeling awful and I feel relieved now I know what's wrong x

    • Apple88
      Apple88 dobb34487

      Posted

      I bet you are...

      It's nice to be able to hear from people with similar problems. We will get through it and hopefully be better for it.

      I'm a teacher so think I'll be really apprehensive about going back too soon 😔

      Thanks again for your support.

    • dobb34487
      dobb34487 Apple88

      Posted

      Yes you don't want to be back surrounded by pupils too quickly.If you're going to be operated on in the next few weeks then would you have the summer holidays to recuperate?And be fighting fit (hopefully ) by the new school year smile

      I'm amazed how many women have problems and get fobbed off when there is something obviously wrong.

      I wish you all the best and please let me know how you get on and feel free to ask any questions.It is all a worry,I know sad

    • Apple88
      Apple88 dobb34487

      Posted

      Thank you so much for your kind words.

      They've given three possible dates so I'm thinking it might lead me through to the summer holidays.

      Better chance to rest and recuperate I hope.

      Take care. X

  • deborah14887
    deborah14887 Apple88

    Posted

    Hi

    I had a Bilateral Salpingo Oopherectomy (so, cysts, both ovaries and fallopian tubes) removed a week ago today.  I'm in Australia.....  The surgery was laproscopic, so 3 small cuts. I was in hospital for just over 24 hours before being discharged and I will be unable to work for 2 -3 weeks.  The operation was pretty straight forward it seems and although I did like the anesthesia (i throw up) I felt pretty good from day 1 and every day is better and better. There is some bleeding after the operation (which I didnt expect) but it is quite light ofter the first day or so. I was uncomfortable for about 5 days with the gas in the abdomen but as that exited, things got better and better!  Now at day 8 the incision points are a little sore but thats about all. 

    Hope this helps.

    • Apple88
      Apple88 deborah14887

      Posted

      That sounds reassuring - thank you! Would you mind me asking why you had to have it done and how old you are? If it's too personal - just ignore me!

      Wishing you all the best with your continued recovery. X

    • deborah14887
      deborah14887 Apple88

      Posted

      I am 56 and its a bit of a long story!

      I had a post menopausal bleed - a bit of spotting really.  I had never had menopause symptons but I had a ovulation pains - sharp pain for 10 -15 minutes everytime I ovulated (usually 2am some some reason).  I had ultrasounds and they identified a cyst on my ovaries that came and went (I had ultrasounds over about 5 years). In my late 40's I developed heavy periods and I had a Mirena IUD which worked a treat! When the Mirena was removed earlier this year and a blood test identifed a that I was post menopausal but I had another bleed.   Yet another ultrasound discovered the cyst was back and I was given the choice of 'wait and see' (the cyst was simple clear looking) or having the procedure. I chose the procedure!!

    • Apple88
      Apple88 deborah14887

      Posted

      Thank you.

      The Mirena ended up causing me so many problems, and my consultant think it's probably the cause of my hydrosalpinx too.

      I hope your recovery continues on the path to you feeling well again.

      Take care.

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