Should I have a hysterectomy?

[hunnypot93]

I have several fibroids and an enlarged uterus. My gynaecologist has offered two options: uterine artery embolisation or a hysterectomy, removing the only the uterus and leaving the cervix, ovaries and fallopian tubes.

I am (nearly) 37 and do not want children. The fibroids were so bad, I had to be rushed to hospital in severe pain and had two blood transfusions. I am currently taking birth control pill, continuously, which has reduced some of the bleeding.

I am very confused which option to go for. I have fears about both options.

My fear for the uterine artery embolisation is going back to heavy periods. I have had heavy periods all my life, not just due fibroids (though they have made my periods worse). Even at school, my friends would comment on how much heavier my periods were compared to theirs. I have taken many days off work because my heavy days were/are so bad I need to lie down and rest and try to cope. I have read periods go back to normal after this procedure but my normal is still scarily heavy. I would go with this option if my periods would be that of an average woman of my age.

My fear of the hysterectomy is all the possible things that can go wrong with it; long term bladder and bowel problems, damage to surrounding organs and tissue, infections, painful sex, vaginal dryness and will early menopause cause problems? And cosmetically, the scar, but that's not a big issue.

Has anyone else been in this position with these two options? Which did you go with?

[hunnypot93]

Another thing I fear about uterine artery embolisation is how long does it last for? Will new fibroids grow and I will be in the position in a few years time?

[meggiemog in reply to hunnypot93]

Hi Hunnypot93,Ultimately it is your decision to make, and one I don't envy. Personally I had many issues myself before opting for a hysterectomy and it was a good decision for me. My fibroid was very large and actually stuck on the outside of the uterus- so I didn't bleed heavily, just had really intense back ache. I had everything removed - but I had already had an ovary removed previously and went through the menopause at 28. You would have less problems if they only remove the uterus. If the ovaries remain you are still getting hormone release into your body. I take HRT - I know it's not for everyone- but it has helped me immensely.

I can't comment on any other treatment, I had tablets offered to shrink my fibroid - but was told it would be unlikely to help due to the sheer size of it (was the size of a coconut). I just wanted rid of the pain!

Hysterectomy is something that takes a lot of time to recover from - 8 weeks off my office job for me - but to fully get back I would say it takes about 18 months. I did feel tons better at 6 months - but always ended up with a swollen abdomen if I did too much.

I hope this has helped you a little bit and hope that whatever you decide, everything goes well for you.

[LouiseD1]

Hi hunnypot93, It’s so hard to know what to do isn’t it, to decide which is the best for you. Sometimes I think it’s better not to have options and just to be told you have to do something. I had a very large fibroid and had a subtotal hysterectomy (ie kept cervix and one ovary, other already removed for cyst) 2 years ago this week at age 48. I hadn’t suffered with heavy bleeding, as I had never had heavy periods, but that must be really awful to live with that too.

I wasn’t offered the option of embolisation, we did talk about taking the tablets to reduce the fibroids but agreed that it would only reduce not solve the problem.

Having done it, I would say hysterectomy is a good option, the problem is gone forever and I have lost all back pain (like meggiemog) and feel better and fitter than I have done in years. But it is a really big op if abdominal rather than keyhole surgery, that I agree takes up to 2 years to fully heal and recover your strength, so you should be prepared for that. I’m on HRT as my one ovary failed and I went straight into menopause symptoms, but again I agree that HRT is fab and has solved all issues for me so far. You do have to do pelvic floor exercises every day, but to be honest, we should all be doing those anyway - and I don’t know about you but my fibroids were causing bowel and bladder issues, so things now behave much more normally than pre-op.

It is an entirely individual decision and everyone has a different experience of hysterectomy (some would say it’s a breeze compared to my experience for example) but can you imagine no more bleeding ever ? What freedom !!

Good luck and think positively about whichever route you go down xx

[Hidden]

I had a hysterectomy 14 weeks ago due to large fibroids. Had abdominal as fibroid too large for keyhole. I really don’t regret it. No more bleeding, anaemia, iron transfusions. I also hadn’t appreciated how much it was pressing on my bladder as I felt like I always needed the toilet before. I’ve had a relatively good recovery (my wound split slightly at 3 weeks but healed quickly). I’m still slightly tender in the middle of my stomach but on the whole don’t notice it. I had ovaries removed too so started on HRT gel which seems to be working well. I’m 48 and got fobbed off with other treatments although not embolisation as too risky because of history of blood clots. Other treatments seem to be to try and delay hysterectomy- seems like that’s where everyone ends up finally so I’d go for it at earliest opportunity and cut out years more pain and bleeding

[hunnypot93]

Wow! Thank you everyone for your replies - you have helped a lot. Just knowing that there's other women out there who know what it is like to have a hysterectomy and living afterwards has calmed me. There's approx. 15 years before I reach menopause. What will periods be like, what will life be like for the next 15 years? Will uterine artery embolization give quality of life for the next 15ish years. I feel I could be in this position again before menopause. I think, I may well be going for a hysterectomy.

The fibroids have been giving me bladder and bowel trouble. I've been waking up every night needing a wee. There's one fibroid that's bulging out of my abdomen that changes size and position ever so slightly. This is only my guess, but I think it may move inside and that's why how often I need a wee, changes from day to day.

[HGate]

Hello hunnypot93,

A quick note to say that I had a scan to see if UAE was possible, and unfortunately it wasn't for me, due to the fibroid locations, but I was pleased that I explored it first.

The consultant I had was very keen for me to explore UAE, as it's much less invasive. I don't have any information about the success rates, but it seemed at the time, from my online reading, that it's a favourable option for many. I wasn't aware that UAE could increase bleeding.

I'm not sure if this has been much help, but I thought I would write, just in case.

PS I too, am waiting and share your fears! My fibroids have grown a lot over the past two years (I'm now 39), and I feel I perhaps held out too long, thinking I could adapt and live with them.

I'd recommend getting on waiting lists ASAP - I've been on the list for 6 months and COVID is definitely holding things up, but at least it's given me masses of time to come to terms with it. I am in weekly counselling, which has helped me move from deep fears, grief and shock to a feeling that there could be some opportunities in this.

Take care and good luck to you. xxx

[Sunnywoman20]

Everyone is different and ultimately it will be your decision but for me having a hysterectomy was the best decision ever. I wish I did it earlier. Same as you had a large fibroid. Three months on, I’m in a much better physician and mental shape than before the surgery. I also wish I read more about positive experience after the surgery as I was terrified it would take months to recover, and about the complications. In fact, exactly as my doctor said, I was back to normal 6 weeks after (it wasn’t laparoscopic). It is amazing not to worry about that heavy bleeding, anaemia and bloating. I’m 49. Exercise daily: cycling, Pilates etc. Made sure to do physio as nurse recommended, moving into gentle Pilates after a couple of weeks. I went on HRT as ovaries were taken out too and feeling 100%. Lost some weight too, as a bonus, as I’m much more active now. I just think there are more positive stories out there than one may find online.

[MCM2001]

I had a hysterectomy, (ovaries left) 7 weeks ago just after my 41st birthday due to lots of problems with heavy bleeding, anaemia and pain. For over 15 years I was told I was too young for a hysterectomy, might want more children, early menopause etc I have a failed ablation in August and was expecting the hysterectomy to be an exploratory laparoscopy and to treat some Endometriosis but surgeon went straight to laparoscopic hysterectomy to save me another operation.

Although my recovery is frustratingly slow (I was readmitted at 2 weeks with an infection) I am already better than before the op, the constant pain, heaviness and pressure in my stomach has gone and already I'm not anaemic!

The histology came back saying I had Adenomyosis.

It has to be a choice that you are happy with and be prepared for a long recovery.

[4dogs81]

Hi Hunnypot93,wish you the best with this decision, I know it’s a difficult one to make. I wanted to share my experience as I’ve had both.

Started similar to you at a young age where periods we so heavy. Iron and other supplements plus the prescriptions weren’t working. Rushed to the hospital more times than I count to try to control the bleeding. I went through 2 fibroid removals about 2 years apart at 23 and 25. One the size of a grapefruit and the other a baseball. By the 3rd time I had more than 5 fibroids at a variety of sizes, plus endometriosis. At that point the doc recommended UAE that lasted 6 years. Then it all came back so I was looking for a more permanent fix and was recommended to go through with the hysterectomy.

My doc was skilled on doing the robotic laparoscopic hysterectomy. If you have robotic available as an option I would highly consider it.

There are risks as with any surgery but for me it came down to quicker healing time, minimal scar (maybe the size of my fingernail) and less risk of bowl or other organ damage. I’ve not experienced vaginal dryness nor painful sex.

This was last year and I feel so much better at 39 than I had in my teens or 20’s.

Hope this helps and good luck with your research.

[hunnypot93]

Hello everyone, it's been a while since I was last here and wanted to say thank you to everyone who have offered advice and shared their experiences. I hope that this thread will be helpful to anyone else who may be weighing up their options.I am on the waiting list for a hysterectomy. No one knows when the operation will take place due to the number of covid cases - all non life saving surgery has stopped at my hospital.

I am scared I will be hospitalised again due to the fibroids. I am taking birth control pill continuously and have tranexamic acid and mefenamic acid to help with the bleeding.

It's been quite an emotional experience and I cannot wait to have the hysterectomy so I can physically and mentally get better and move on with my life.

[MCM2001]

Good luck, I hope it happens soon, and you can then start to physically and mentally recover.

[hunnypot93 in reply to MCM2001]

Thank you MCM2001! I hope it happens soon too. My local hospital has had to stop all surgery, including urgent surgery, I don't know when my turn will be.

[Kemali]

Hi hunnypot93, I was diagnosed with several fibroids in 2018 and have had very heavy continuous bleeding, and very bad hot flushes. I was given Prostap injections to shrink the fibroids approx 20 which didn’t work put on HRT which caused my fibroids to grow. I had a ablation to burn away the lining of my womb to help with the bleeding, this helped a little but still had to wear pads and incontenence knickers as bleeding was unpredictable. I have just had a total abdominal hysterectomy with bilateral salpingo oophorectomy which basically is everything removed(the womb, cervix, Fallopian tubes and ovaries) 2weeks ago. It was a 5 hour op as I had an enlarged uterus I had staples to close the wound as they were more sterile than stitches. I had my staples removed at my GP surgery no problem 2 days ago and healing great just given gauze dressing to change daily no .I was in hospital overnight and home by 6pm next day as I felt I would recover better at home and I have someone to look after me 24/7 for the next 6-8 weeks. I stated to walk up and down my living room for the first week about 10 laps daily approx 3,000 steps daily. Then the second week I walk daily around the block, sleeping was difficult I was lucky I have reclining sofas so slept on them for first 7 nights/days as I was very uncomfortable painkillers(paracetamol x2 and dyhydracodine every 4 hours), then went to bed slept on my back with 2 pillows under knees for comfort. Now I only have the dyhdracodine at night to help me sleep and 2 x paracetamol , also maybe once in the morning I have 2x paracetamol. I find it more comfortable to sleep on my side with a pillow under my tummy and one between my legs. I have also still got my surgical stockings on, today is day 3 of staples being removed and even after my walk around the block I am feeling much better and a lot more comfortable. Hope this helps.