Hysterectomy sucsess??

[Cyprus92]

So, really contemplating a hysterectomy.

I am 28 years old and so fed up with this monthly pain.

I know it doesn't always help, but has it helped you?

[Lou93]

Hi I’m 27 and want one too but they won’t consider it yet because of my age 😢 but I know I don’t want children and suffer with pains on a daily basis,I’ve read so many comments about positives and negatives but I think it’s always a personal choice xx

[Moon_maiden]

I’m much older and would say yes now, previously I wouldn’t.

It’s something you really have to think about, pros and cons. Go through what you’ve tried very carefully, work out other possibilities or options, also with GP or gynaecologist.

Hormones are notorious for effecting judgment and rash decisions based on emotions.

The pain is horrible and I hate painkillers, this wretched thing drives you to try things.

Take care

[Cyprus92]

I have been on Zoladex for 7 months.

They believe my endo will be in my ovaries or womb due to not finding much on my lap, they removed what they found, but still in a lot of pain over a year after lap.

I am on Zoladex, hrt, oramorph and codeine.

Not daily but my monthly kills me, I fainted this morning for the first time this morning, I just can't cope.

I am seeing a counsellor but I don't think I want children.

[YellowMad]

Hi... I had my hysterectomy at 26 years old last october..I had my womb tubes and cervix removed with ovarian conservation.. .in terms of adeno symptoms it's been a success. I had severe adenomyosis with stage 4 endometriosis. In terms of endo I'm still not too sure as I've had issues with hemorrhagic cysts and ovary pain and urinary issues...I experienced retention mid may and have since been catheterised... I failed my trial without catheter in june..got an appointment with urologist and endo team in August...praying to get answers... consultant suspects endo in bladder or trauma post hysterectomy...

My advice is everyone's body is different, weigh out the pro and cons and do what you feel is best for you with an open mind. If you don't have adenomyosis it could be a rash decision. You don't want to end up with more worse symptoms.

Hope that helps.. endo is ruthless and each day is a battle.. getting better is a fight..

Good luck in finding what works for you...

Xxx

[jburd in reply to YellowMad]

I had the same situation and operation in April of this year. So far, so good. I am 48, and it was necessary to stop the bleeding that started the day we went into lockdown. Scheduled it earlier, it was cancelled, then I had emergency surgery during the pandemic. Crazy times. My fibroids were attached to my uterus in a place they couldn't operate without removal, stage 4 endo, and adeno. After a lifetime of pain I am trying to adjust to "normal". Kept my ovaries for now, hope I don't regret that. Each person is different and it took a long time to reach this decision, so my advice is take your time. You'll know when you're ready, when you've had enough. Yellowmad, I am sorry to hear about the bladder issues, that is my big fear, but after two bladder surgeries I am just hoping for the best. I hope your bladder issues resolve so that life can be good again. As of now, I am happy with my decision. The fibroid was making my sciatica unbearable, and I've had to learn to walk without it. My butt is flatter, which no one tells you can happen , but I like it better this way. My pants fit so much better! Read as many stories as you can from hystersisters abd I hope you find some relief!

[livvi_livvi]

Hey, I had a total hysterectomy with tubes and ovaries removed at 28. Its not a small operation or a small decision. Going through the operation and plunging into menopause (for the next 20+ years) is a lot for the body to deal with and has long term detrimental effects. For me it helped with chronic pelvic pain but as a direct result I have now developed fibromyalgia which is worse than my endo pain.

It will not be offered as a choice for you unless you have tried every other possible treatment combination and your endo specialist believes that there is likely to be benefit from it.

I see that you say you are on Zoladex yet still have monthly pain - do you still have periods? If so the zoladex may not be totally working.

Have you had a specialist complete endo excision or just been seen by general gynae??? I would advise you to contact your hospital and explain the situation and ask to be seen again to review the the treatment plan.

Xxx

[Hidden in reply to livvi_livvi]

I think everyone’s experience with Zoladex is different depending on where the endo is. I was on Zoladex for 10 years on & off and still felt daily pain. This I was told is because of scar tissue and the endo was basically everywhere😩

[livvi_livvi in reply to Hidden]

I agree Zoladex does affect people differently and I myself had daily pain on it.

However, having monthly pain could be a sign that it is not correctly down regulating hormones to halt periods. And therefore would encourage if this is the case that they need to re-seek specialist advice.

[Keke123]

If zoladex isn’t working then my understanding is that a hysterectomy won’t?

I’ve been on zoladex for 2 years now, coming up 3 and I keep begging for a hysterectomy but they won’t let me. I’m 29. Zoladex has taken my pain away so as it’s a medicated menopause I can’t see why it wouldn’t take it away with a hysterectomy. Apparently I’ll just be having injections every month instead 🙄🙄

But yeah basically I think the nhs have been sued so many times for giving people early hysterectomys and it not solving the endo that they now really try not to do it anymore. At least that’s what my dr said after I begged him the last time.

[Hidden]

Completely agree, Zoladex and a hysterectomy seem to be what inexperienced gynae consultants dish out.

[Cyprus92 in reply to Hidden]

What else would you suggest just out of curiosity?

[Hidden in reply to Cyprus92]

Unless your endo is just on the organs that are removed with a hysterectomy I wouldn’t bother, look up ‘Nancy Peterson’ and try to get an appointment at an endo specialist hospital.

[Anna1511]

I am 40 and 2 months ago I had one- abdominal.

I tought about it for almost a year but couldnt anymore with the pain and periods since am on blood thiners.

My uterus was 20cm and weight was almost 2 kg.

It was pressing against everything and going to the toilet every 20 mins to pee and nights soooo often.

It was one of the most diff decisions I had to take But a good one!. I didnt want kids so it was easier for me than it is for other women I think. Pain i used to have its almost gone.

I was not given an option to try this or that- this was my only option. It was a must and not a you want or not.

Surgery pain lasted a good whole week with pain killers. I tought it would be worst to be honest.

We women are strong.

Try reading more on

Hystersisters.com

So much information on there!

Best to you 😘

[Gingernut74]

It has hard as everyone is different & I was told it doesn’t always help, & no it hasn’t, it did for a few months & then the pain returns like it does after trying anything, I’ve since had a laparoscopy & endo adhesions removed & things separated that were all stuck together, but the more surgery you have the more adhesions you get from it which then can cause things to get all stuck, it’s a personal decision but when you are at your wits end you’ll try anything - good luck, try reflexology & reiki - it’s amazing & does really help & worth a go rather than pumping more chemicals, meds in & surgery. 👍

[Cyprus92]

Thank you for all your messages.

A bit more on me, I was put on Zoladex to be on it for 12 to 18 months with a view that I would have to decide children or hysterectomy.

My surgeon is a gyne surgeon and hospital specialist. I trust him.

He said a hysterectomy would be the last thing they would want to do. I'm having counselling to decide if I really don't want children or if it's just the pain talking. But, I think I have come to the decision that I don't want children any time soon and can't cope any longer with the pain.

I had a lap a year and a bit ago and he cut out what they found, albeit not a lot. Which is why he thinks there is a huge possibility it is in my ovary or womb as I get so much pain.

I haven't had a period for years and the Zoladex seemed to be working up until this month (last 2 days ago) the pain was chronic and I fainted for the first time.

I tend to only have to have pain relief 2 3 days a month, the odd oramorph in the evening. This month I have had codeine, paracetamol and oramorph.

I wounder if I would be able to go for another lap? The pain seems higher than it did since starting Zoladex. So feel it's working on the pelvic side but not higher...

[livvi_livvi in reply to Cyprus92]

I would 100% start with another excision surgery before if thats the case. X

[Cyprus92 in reply to livvi_livvi]

I'm going to call my endo nurse on Monday to talk this through. I still think it's like a 70 week wait though x

[livvi_livvi in reply to Cyprus92]

If you access to that its a good idea. Gosh that wait is huge. 😥 x

[Noodle1984 in reply to Cyprus92]

If it’s in your uterus an mri will be able to tell if you have adenomyosis or not. A hysterectomy will not get rid of Endo but it is a cure for adenomyosis.

[Nupti55 in reply to Cyprus92]

I am really sorry. I felt like that for years until a friend suggested folic acid. My life changed after 3 month of taking 900 mg of folic acid. Please do not do any more surgeries coz they may mess up your body or organs. Just try folic acid for 3 months and be patient.

[Chicken2012]

Hi I am 40 . I had a phone call this week and was offered a Hysterectomy. I am taking Depacteyl and HRT . I have been popped into a temporary menopause, I am less bloated and feel well on it. Haven’t touched strong painkillers for a while. I think it’s recommended that you try this first, I am also going to have a few months of not having the injection before I make my mind up. Also you are young so I would take a while before making your mind up.

[restlessstoz]

Very briefly, my daughter was 36 and had a hysterectomy (leaving her ovaries) in August last year. She had endometriosis removed at the same time. By the end of September, she was already experiencing symptoms again and by January this year, it was as bad as ever and ended up with a twisted ovary which then died and had to be removed. She regrets having lost her 'bits' and not had any relief from the endometriosis. It's not always the answer so research well first. Good luck.

[Jraid]

I had a hysterectomy 2 years ago at the ago at 41 after 10 years of successful pain management from the marina coli (replaced after 5 years).

I had a hysterectomy as adenomyosis was diagnosed via MRI however my histology report doesn’t reflect this!

I also suffered with chronic pain from 7 weeks post hysterectomy and ended up with a laparoscopy 7 months ago where endometriosis again was found in my bowel and bladder. 5 months after pain has returned but not as bad and not everyday but it dose affect my activity level and comfort.

What I’m saying is try the marina coli that might help? I wish I could go back to that now!!

Good luck x