Hysterectomy or Not

[Janeyjane20]

After 20 years of fibroids and having them removed and the growing back I am 56 years old still not started the menopause I take Northisterone every day to stop very heavy bleeding and huge clots my fibroids are multiple with one large one about 12cm also at the minute I have slight bladder leakage !!! They have suggested a hysterectomy now after all this time I was hoping to reach menopause and the fibroids shrink but still nothing happening has a hysterectomy changed anyone’s quality of life and what is recovery like I don’t have hardly any pain with my fibroids thank you

[dawntildusk]

Hi Janey

You must be so frustrated hanging on in there for the natural menopause, as they say it regresses then, and its not coming. Are you not showing any signs??

I had to have a hyster for stage 4 endo and adenomyosis at the age of 37 as the heavy bleeding and flooding was out of control. Im not going to lie it was a hard recovery but it has given me my life back. They removed everything but one ovary to hold off menopause for me due to my age but it is estimated that it will fail within around 5 years. I had to take 3 months off work (tried going back at 7 weeks and it made me bad) and i would say it was a good twelve months before i felt fully recovered and had a spring in my step again.

It isnt an easy option but the prolonged, chronic, pain, and bleeding was making my life unbearable so it was worth the risk for me. Both the mental and physical symptoms really took there toll.

Is there any way they can check your hormone levels to see if there is any indication of how close you may be? Will they be removing everything? It would be important to have any endo excised at the same time. Have they discussed how a hysterectomy may affect your weak bladder?

[Janeyjane20 in reply to dawntildusk]

I’m taking northisterone so not sure if a hormone test would be accurate I think it’s just the thought of having an abdominal hysterectomy that puts me off but I know it will benefit me I’m 56 and feel like I need my life back thanks for your comments x

[dawntildusk in reply to Janeyjane20]

my mother in law at 74 has just had an abdominal hyster and she felt recovered in 2/3 weeks. if only!!

[Strawberry117]

Hi. I don't suffer with endo, but my case is similar having very heavy bleeding for many years and large fibroids, one which had entered the uterus and caused large blood clots as well. I too didn't want a hysterectomy and tired tablets to reduce bleeding and a coil . The coil wouldn't go in as the fibroids blocked it and became so poorly last year thought I was having a heart attack when climbing to see a local castle. Turned out I was severely anaemic due to years of heavy blood loss and needed two urgent blood transfusions. I was told that they were just fixing a leaky tap and needed a hysterectomy. After having prostrap injections to shrink the fibroids, I had my hysterectomy keyhole last month. My advice is to go with the hysterectomy. I tried other methods but was always told I would probably need one in the end. I had just started a new job and didn't want to take time off work. But work have been supportive. You just need to listen to your body and allow yourself to heal. The first two weeks are painful as movement is limited, but after that it gets a little easier each day and I just tell myself that it will be worth it. Best wishes to you xx

[Strawberry117 in reply to Strawberry117]

Ps, although I didn't have a weak bladder with leakage there was always urgency and had discharge since teens (now 47). My bladder was stuck and they were able to release it, the urgency has improved a little but I have been doing some pelvic floor exercises.

[Janeyjane20 in reply to Strawberry117]

Thank you so much I know I will benefit just a bit scared about it all wish I had been offered one years ago xx

[Strawberry117 in reply to Janeyjane20]

As dawntildusk mentioned, it's not easy but when you've had years of chronic pain and bleeding it's worth it. My problem was that one fibroid had entered the uterus wall but size was medium of all my fibroids so prostrap was able to shrink them. Although I had mine keyhole I had complications and was under a lot longer, so not as straight forward as a regular lap. I also suffer from anxiety. But forums like this are so good as it helps us to talk about our anxiety. I am in my 6th week of recovery. My stomach now feels like it's pulling and knitting together inside. The main thing to remember is especially for the first few weeks, rest completely then keep on the move a little at a time. Don't be tempted to do too much too soon and crouch down rather than bend. Other little tips...get someone to make up a small flask for you and fill a small jug with milk...buy a set of empty travel bottles to decant large heavy liquids into such as washing up liquid and surface cleaner. Ask friends and family to help as much as you can for the first month. Try to remember that although a major operation it's also a very common one and you're in the best hands x

[Janeyjane20 in reply to Strawberry117]

Thank you so much I also suffer with anxiety but have a great family prostap did shrink my fibroid slightly but I bled everyday with it so only had 4 months of it I do need to have some normality now too thank you for your time to reply 👍x

[Janeyjane20 in reply to Strawberry117]

Glad to hear you are on the mend sorry you had complications but hopefully onward and upwards now for you xx

[Strawberry117 in reply to Janeyjane20]

Thank you...yes hopefully afterwards it will bring some normality for you. All the best xx

[Janeyjane20 in reply to Strawberry117]

I had prostap last year can’t have keyhole fibroids are too large x

[Afrohair]

Hi there not in same boat but could you ask them to induce menopause till the time comes sounds a Shame to go through hysterectomy now there are things like prostap

[Pinkprincess22]

Hi

Although younger than you at 42 I’m currently going through similar issues...

Had a large fibroid and endo removed one September, offered 6 months of hormone injections to help shrink what’s left and put in a medical menopause which has been miserable.

My specialist stopped the treatment last week as I’m bleeding heavily again which shouldn’t be happening with the treatment.

Waiting on mri results to see what’s going on but think hysterectomy is my only option now after 4 years of battling with pain, heavy bleeding, being anaemic and putting life on hold... I’m miserable but scared about if I have to have the operation too as it’s such a big operation.

I’m glad I saw your post as I’m stressing about the unknown until I see my consultant next week and it’s just nice to see someone else is in a similar boat... makes you feel you are not on your own x

[Janeyjane20]

I really feel your pain you want to feel normal !! But anxious of the op I am no different but been 56 I’m a young 56 lol and want to feel healthy I’m waiting for another ultra sound and I know they want me to have an abdominal hysterectomy so at some point I need to accept it try not to be scared and fingers crossed it will give me my life back hope you get sorted too you are still very young and it would be great to wake up and not have to worry if today I am bleeding or flooding. So let’s see what happens next good luck xx

[geekybird]

I had a hysterectomy last April due to heavy bleeding / anaemia caused by fibroids. I'd had various procedures over a period of years, including a hysteroscopic resection, a UAE (+myomectomy due to a complication) which worked for a few years and another UAE which didn't work. I drew the line at an ablation, figuring that like the UAE the results would only be temporary, and finally went for the hysterectomy. I was on Zoladex, similar to Prostap, for a few months but it didn't work and I was still bleeding. In the end I was able to have a sub-total laparascopic procedure in which they macerated my womb in a bag in order to remove it via small incisions. My fibroids were smaller than yours so that may not be an option for you. It's also not recommended if you've had reproductive cancer or there's a history of it in your family, in case anything isn't contained.

Yes the recovery takes time but for me it was definitely worth it. I wish I'd had it done years ago! I feel normal again and the lack of monthly bleeding (gushing) is a revelation

I hope your menopause kicks in soon so you can avoid major surgery but if not, I hope it all goes well for you.

[Janeyjane20]

Thank you I’m glad you feel great now that’s what I want to feel like and although I haven’t had it done yet I wish I had took the plunge years ago I might not say that in the future lol but hope so x

[Bluenose51]

Hello, I hope you don’t mind but I’m interested to know if you decided on a hysterectomy?

I’ve been suffering with bleeding for the last 2 years. I’m 53 and had a Mirena Coil inserted after my son was born 14 years ago which stopped my periods, think I’ve had 3 during that time. Then, 2 years ago, I started bleeding again. I have had 2 hysteroscopies and have been told that I have a large uterus (14 weeks) and fibroids. Biopsies came back clear.

I was given two Prostap injections over 6 months but once these wore off the bleeding came back and is getting worse. The last couple of days it has been really heavy and there are a lot of clots. I still have a Mirena coil, unless it’s come out over the last two days.

The idea from the doctor was for me to hopefully hit the menopause and fibroids would shrink but I just don’t know whether I can carry on like this. I plan to ring GP again and see what they can suggest.

[Janeyjane20]

Hi yes I am I’m just waiting I’m 57 now and still not hit menopause I have one large Fibroid and a few small ones I have had prostap that made me bleed continuously I take 30mg of Northisterone every day which is not great !!! I still have a random bleed but I just can’t plan anything just incase !!! I wear a pad everyday I feel like I’m 90 not 57 but it’s affecting my bladder so I can leak wee at anytime due to the pressure of the large fibroid so I could wait for menopause and hope fibroids shrink but they don’t always and I could still have the bladder problem !!! Trust me the thought of an abdominal hysterectomy scares me as it’s major but I honestly don’t have a choice !!! My last big blood loss was enormous and ended up on a drop of Transexamic acid as I had passed out In The bedroom I just want my life back but there seem to be some not so positive stories about hysterectomy I think that’s what terrifies me I feel for you hope you get sorted xx

[Bluenose51]

Thank you for your reply. A friend of mine, who is in her 70s, had a hysterectomy years ago and says it was the best thing she ever did. She had fibroids on the outside of her uterus.

My bleeding has lessened today but still not great and I have decided to ring my GP in the morning to see if I can get a phone consultation.

I really hope all goes well for you and you get sorted very soon.x

[Janeyjane20]

You too thank you to be honest I wish I had had this done years ago good luck 👍x