Total hysterectomy with oopherectomy recovery advice needed please!

[Hailun]

Hi all, it’s been about 3 years since I wrote into this group. Back then I was considering having a hysterectomy to help relive the symptoms of severe endo. I still couldn’t decide so I decided to wait and see how I felt in a few years.

Well, life had other plans. I got stage 3 ovarian cancer at 40 years old. I had a couple of huge tumors and an ovary and fallopian tube removed via a laparotomy (large incision) and cleaned up the rest of the cancer cells with a natural immune therapy, among other things.

The incisions didn’t heal well and I have a big hernia which needs repairing. This has got me thinking again about having a hysterectomy. The last thing I want is the hernia repair only to have to cut through that (there’ll be a mesh as well) to do a hysterectomy at a later date.

My surgeon has given me the option to try hormone receptor blockers first. That can reduce the chances of the cancer coming back but she didn’t really explain yet how the blockers can help my endo. I will still ovulate and have periods. My other option is to have a full hysterectomy, including removal of the remaining ovary and fallopian tube.

That’s a lot of background; probably too much. What I’d like to ask, is what recovery was like for those of you who have a total hysterectomy with ovary removal that was done via laparotomy (large cut - mine will be from pubic bone to just under the ribs). What tips do you recommend? I feel unsure to ask this on the ovarian cancer forum as 99% of the women there have had to recover from a radical surgery and cope with chemo at the same time.

Many thanks for your help!

[megiiva]

Hi Hailun

Life always have some other plans for us,but you are a fighter as I can see I'm in the similar boat as you at the moment. Have severe endometriosis already had two laproscopic operations one for a large fibroid the other just because my pain and symptoms plus had an endometrioma burst into my pelvic and voila been diagnosed with Endo stage 4. Waited with pain and limited quality of life if it healed, and now 10 months later, I m booked to have a total hysterectomy with ovaries cervix,tubes to be removed end of April. I m 44 and currently in late perimenopause and spoke to many women about the operation plus the surgical menopouse there is a Facebook group as well for support after the operation. Apparently everyone is different all depends on your body and if you had anything else like more endo to be cleared as well. Ussually is 6 to 8 weeks recovery with no lifting anything more than a kettle. I would love to know other ladies here as well their experiences. We can do this xxx

[Hailun in reply to megiiva]

Thanks megiiva,

I wish you all the best for your surgery. I hope it helps your symptoms. Endo is a right pain. Will you take HRT afterwards? I won’t be able to. I heard about not lifting anything heavier than a kettle. I’m a bit worried about that as I’ve got a 6 year old to look after too! I’ve still to see a couple more surgeons for a second and third opinion, but I’m leaning towards having the surgery. Can’t cope much longer with this pain.

Take care ☺️

[Jingles11]

Hi, I had a total hysterectomy, with oophorectomy. I had been diagnosed with adenomyosis, endometriosis on my ovaries and several large fibroids. My surgery was done with a hip-to-hip incision, because my uterus was massive! The recovery was probably about 3 to 4 months but definitely worth it to be pain-free and to feel normal again. It wasn't an option for me not to have it as I had terrible bleeding and had tried everything.Best of luck x

[Hailun in reply to Jingles11]

Thanks Jingles11,

It’s so nice to hear that your surgery was worth it. I’ll have to focus on thinking that it’s just a few months then I’ll be fine again. How did you cope with the sudden lack of oestrogen? Thanks for your message x

[Jingles11 in reply to Hailun]

Hi, I went straight onto a very low dose HRT patch within about four days after the surgery. Then after three months on the low dose patch I felt I was getting some mild menopausal symptoms. So got the GP to give me a slightly higher dose and now I feel completely fine. I was really anxious before having the op since it wasn't keyhole. And especially worried about the sudden lack of oestrogen but it's been fine. I haven't felt better. Obviously, some women dont feel they need to take hrt or can't, but because my mum has severe osteoporosis I thought it would be better to take it .Hope this helps x

[Hailun in reply to Jingles11]

Thank you. I’m not advised to take HRT because my cancer was 100% oestrogen receptor positive; so I’m a bit worried about what symptoms I might have. The potential loss of bone density is concerning, especially because I already have scoliosis and an arthritic spine and joints, but it’s also a side effect of the hormone blockers too. I guess we just can’t predict everything! Thanks x

[Endolemon]

I had a hysterectomy 4 weeks ago through the key hole. Stayed in intensive care after. Feel not bad now, but I am doing nothing, only walking a little outside. Hospital gives you 6 weeks sick note and for next one you need ask your GP.

Suppose to have a check in 6-8 weeks with HRT discussion. Having Prostap injections prescribed for 6 months 💛

[F1Lucy]

Hey Hailun! So sorry to hear you've been going through all of this, I can see how tough you are going up against everything!

I had a total hysterectomy, with oophorectomy in November 2023. I only had one ovary as had the other removed due to Endo 14 years ago.

My surgery was keyhole, so not quite as invasive as yours. I was suffering a lot with nausea and so much pain, that within three days of the op I felt 100% better! No being sick and weirdly no pain where it's been for years. I have some lower back and hip pain which I'm waiting for physio for, but within a week of the op i was going out walking and didn't feel as much pain as I had before the op.

I was put onto HRT patches a week after the op, was advised by the team to take Evorel Conti for 6 months and then move to Evorel estrogen only. I was having Zoladex injections pre-op for 9 months as I was really struggling - that's supposed to push you into a menopause but I didn't notice any changes.

I'm pleased I had the surgery as I couldn't live in pain anymore. For about 6 weeks after the op you can't do too much, no lifting etc. Gentle walks really help mentally too and I was reading a lot too. I waited 16 months for the surgery so I was really pleased when it came around.

I know you have a really hard decision to make, but do what feels best for you. Ask the doctor lots of questions, things like what will give you the best pain benefits long term. We know they can't cure endo, but if there's something to make you more comfortable then you've made a good step x

[Hailun]

Thanks everyone for your advice and encouragement! I saw another surgeon yesterday. Since my last scan, the doc found something on my ovary. It might be endo or cancer, they can’t tell, so that’s swung it for me to have the surgery! He wanted to do it with the Da Vinci robot, but because the hernia is a big repair job, I have to have a big cut and 2 lots of mesh put in. The surgeon said that the previous surgeon didn’t close me up properly, so I’ve been left with a 6cm hole and the area around the stitches has opened up.

I can’t have HRT, so hubbie is warned! 😂 I only now have to decide if I will have an Omenectomy as well (the abdominal fat lining removed). Surgery is in 3 weeks!

Wish you all all the best x