All prepared to go for hysterectomy and now not sure what to do!

Posted , 8 users are following.

So yesterday I had another appointment with my gyno and after being on Esmya for one course and no shrinkage of my 2x 9cm fibroids and too many to measure in the utereus (doctors words not mine) I came to the agonising decision to have a hysterectomy. Sits down telling him how Im on my second course of Esmya but still having alot of pelvic and lower back pain when Im on or off the tablets so now I want the hysterectomy. Firstly he says that fibroids course no pain. Then he feels my tummy and said it feels like they have shrunk , how he can remember the exact lumpy feeling from 3 months ago is beyond me . With all that said he is ok for me to go ahead with the op which is a 4 month waiting list in the uk  he fills out the paperwork and points out how sometimes the bladder and bowel can be damaged in surgery and I will have a cesarean scar across my tummy.

Im 53 so had my children and I know menopause can shrink them however I have had hot flashes for the past 2 years and periods are as regular as clockwork so really not sure wether to carry on finish esmya and just take painkillers to get me through or bite the bullet and go for it like my family are saying.  Im so confused right now any advice out there?

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12 Replies

  • Posted

    Hi you have described exactly how I feel. Confused and nervous. I worry about the possible damage to other organs and the length of recovery. I can only tell you after reading from ladies on here for a year that there are more positives than negatives about hysterectomy. I've been waiting for menopause in the hope that the fibroids shrink and bleeding stops. I'm 58 and no sign yet. So I'm now thinking of hysterectomy. 

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  • Posted

    Hi

    I am 54 and in the same situation with several large fibroids and endometriosis desperately trying to get to menopause without surgery but having a lot of pain and side effects from the Esmya 3 month course and now 2 months on Zoladex implant. Due for a third implant this afternoon and wondering if I want another one. Got bruising and tenderness at site last time and pain, sickness and diahorrea all month although the 14 days of heavy bleeding and clots has stopped I have had light bleeding/discharge (fibroids degenerating?) on a daily basis. Stomach is changing shape but not sure if fibroids are shrinking or just weight loss due to the loss of appetite and sickness. Not due to see gynaecologist until November for a review/decision about the surgery.

    What a living nightmare and no end in sight! It is awful that everyone on here seems to be suffering so much. Not an easy decision to go for the surgery. I too am worried about the potential damage to other organs but have friends who have sailed through it and said it had given them their life back and they wished they had done it sooner.

    Did you ask about a laparoscopic hysterectomy? This is what I have been offered which has a shorter recovery time plus no scar. If your surgeon does not offer this you could always ask for a referral to someone who does.

    Hope you make the right decision for you 

    Keep in touch

    Julie

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  • Posted

    Wow Julie, that must have been such a hard day. It is so difficult to know what to do. Do you know when your mother went into menopause? I have been told that there is a familial pattern. Have you also been prescribed tranamex for the bleeding? I only just got this when I asked to be referred to St Marys in London. I have had fibroids for about 16 years. So I was shocked that this had never been offered as it is taken only on the days when bleeding is heaviest. There is also another drug that can be given to reduce swelling. Could these be given while you wait for your op? It is very draining. I just wonder if there is a way of knowing how close you are to menopause.

    ​I got so fed up and got these meds after seeing the new gyno but then had the lightest bleed ever it was so light and made me feel like I must be getting closer to menopause. Did they tell you that you get a surge of hormones that increase the growth of fibroids just before menopause. 

    Renae

     

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    • Posted

      Hi 

      I had laser treatment for endometriosis 17 years ago after my son was born and did improve for about 8 years then bleeding seemed to get longer and heavier each month including the massive clots until I collapsed with bad anaemia last year, which is what took me to the GP. I was trying to ignore all the problems thinking it would all sort itself out in the end.

      Not sure when my mum finally went through the menopause but she had several years of really heavy bleeding also. Not the sort of thing she liked to discuss really, and my older sister had a hysterectomy at 34 due to pre-cancerous cells so again no clues there.

      Maybe it would have been useful if GP had taken blood tests at the beginning to check hormone balance before all the Esmya and Zoladex to see if they could have given an approximate timescale. There are others on here at 58 who have still not come out the other side so could still be a few years away. 

      Here's hoping it's not that long

      Julie

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  • Posted

    Hi Julie, I have gone through a very similar thing and like you tried various things, including Esmya. Esmya worked ok while on them but during the break I was in agony......gynecologist said the little sods had not shrunk at all and were poss bigger, I felt I needed a permanent solution as at 51 am showing no sign of menopause......so hysterectomy has been booked for tomorrow *gulp* I have finally got my head straight and now want my life back after many years of feeling so rough and exhausted all the time! My bag is packed and having had many lovely positive conversations with lovely ladies who have gone through this and not looked back I am ready and want is done and dusted......bring it on!! It is such a hard decision, but ultimately I think it was the best one for me, I want to start living my life again.

    I wish you well and hope we will both will look back on this and wonder why we did not do it sooner (fingers crossed).

    Barb

    xx

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    • Posted

      Hi Julie, I came home on Sunday from hospt, the care was amazing and I never felt in too much pain. I am surprised by how well I feel, I am of course still very sore and am moving round like a snail but am sleeping ok, all bodily functions have returned after a slow start 😵, and I feel like I am on the slow road to recovery. The op took nearly 4hours as my uterus was attached to my bladder with adhesions from my c section, I now know without doubt that I made the right decision as no medication or menopause was going to help with that mess! Already I feel more relaxed, don't feel like I need to pee constantly and am looking forward to feeling the full benefits of having this done!! How are you feeling now, have you made a decision yet? xx

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    • Posted

      hi Barbara , so glad you are ok been looking out for your post you brave girl x Theres a site called the hyster sisters which is packed full of info for post ops its really good. No Im no nearer a decision however im going to get a second opinion dare i say it going private as im on my husbands health plan , just got to send off my notes from my doctor and gyno and wait for an appointment. On my second course and second month of esmya at the moment and feeling ok but I know it will be short lived. Take care of yourself xx
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  • Posted

    Hi Julie 

    I had a 11cm Fibroid which was shrunk to 7.5cm with UFE (there's Loads of info on here)

    This has enabled me to have my 1st choice of surgery Laprascopic Myomectomy but there is also Open Myomectomy as well for larger Fibroids. Yes new Fibroids can grow post op but it takes 5 years for a new Fibroid to grow big enough to cause issues. In my case I'm nearly 51 so that won't be an issue as I will have had or be about to have the Menopause.

    The doctor you have seem sounds rubbish so maybe if you asked for someone else who will help you. Fibroids won't just shrink without treatment. So he is wrong there. 

    Whatever you decide 

    Good luck to you 

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  • Posted

    Go online and look for a doctor in your area that does Uterine Fibroid Embolization (UFE). It will take care of your symptoms without surgery. It's a procedure where a tube is fed through your artery to the blood vessels to the fibroids. The blood flow to the fibroids is cut off from the inside, so all the fibroids will die and shrink. 90% of the time, it takes care of all your symptoms. The recovery time is usually 1-2 weeks. I have no idea about the availability of UFE in the UK, but I know there are doctors there who can do it. Good luck.  -Suzanne Slonim, MD

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