Hysterectomy success stories? : Heard so... - Endometriosis UK

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Hysterectomy success stories?

Dancer1992 profile image
26 Replies

Heard so much negativity around hysterectomies. I get why. I know it doesn’t cure endo and there can be complications and it may not improve your symptoms. But I’m seriously considering it and would be doing it to help control my symptoms and take back my life.

Anyone who’s had a hysterectomy and its helped them please get in touch! Would be great to hear some success stories.

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Dancer1992
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26 Replies
Fwright44 profile image
Fwright44

Hi this is my happy story.

I had a full hysterectomy at 41 due to endometriosis. The menopause is breeze, compared to endometriosis. Through IVF me and my husband are lucky to have a wonderful 3 year old boy called Daniel.

When my periods started at age 12 I always had very painful and heavy periods, but didn't know/ understand why mine were so different to my friends and family.

After being unable to get pregnant I had a laproscopy at 34 and endometriosis was diagnosed. I had to wait over 20 years to get a diagnosis and understand what I had. At that time only small amount was found, but just 3 years later when I had second laproscopy it had spread everywhere. All over my ovaries, no wonder I couldn't ovulate. I had to really fight for the second surgery. I got rejected several times. I was lucky that they didn't do a hysterectomy then.

Through working with the union I was very lucky not to get sacked from my job. Female managers were the worst, one told me she thought l wasn't in pain and felt it was 80% in my head. Despite the cocktail of painkillers and antinausea medication I was on, which I had to take everywhere with me. The chronic fatigue was terrible. I was continually referred to occupational health, but most of the time they would ignore the medical advice that would help my attendance at work. I was treated with such disdain, that it transferred to most work colleagues who treated me like dirt.

The pregnancy was scary, because I was such a nervous wreck. Unfortunately by the time Daniel was just a year old the endometriosis symptoms came back with full force, even though I was on the pill. I fainted looking after my son. My husband and family made the decision that we wanted to have a hysterectomy. I was so exhausted in pain, I couldn't be a proper mum to my son. Yet again I had to fight to have the hysterectomy. The simple key hole surgery turned into a 5 hours and nearly left me with a bag, because the endometriosis was everywhere. When I woke up from the surgery I felt this poison had left my body, I felt lighter, very odd.

I am so glad I had it done, take menopause multivitamins and tibolone, also have reflexology to help with menopause symptoms, but it is nothing like endometriosis. I have energy, can take on the world, feels odd not to wake up in pain, best thing ever. Good luck

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Dancer1992 profile image
Dancer1992 in reply toFwright44

Thank-you for sharing this. This really means a lot to hear!

ccsmith profile image
ccsmith

I’m 5 weeks post hysterectomy and recovery is still going on - it’s been a little bumpy. I’m not regretting my decision in any way and excited/eager to get on with my life.

I’m similar to Fwright I waiting a very long time to get diagnosed even though I struggled from very early in my period history. Things got worse for me about 3 years before I had my beautiful girl who’s now 8. She was a miracle as I was turned down for IVF as I had endometrioas on my ovaries and the IVF Dr was the person who finally diagnosed my endo whereas the fertility doctors told me I was just fat (I was only a bit overweight). However 2 week after being declined IVF I did a pregnancy test and my gorgeous girl was miraculously growing. I nearly lost her a few times but I have a beautiful girl who is my everything. I was lucky in that an emergency c-section turned into a removal of endo as my surgeon was a endo reg. I however had a 8 year rocky road of medications after that with side effects, ruptured ectopic and horrendous depression, weight gain and fatigue.

I gave up work a year ago as was on a waitlist for a hysterectomy and was struggling to get to work & function. My consultant made me try Zoladex first to show if my endo was better whilst in menopause. I took Tibilone while I had the Zoladex which is a synthetic HRT and must admit after 3/4 months I did feel so much better. Sadly the waitlist was over a year due to winter crisis etc but I’m there now.

I’m very excited as yesterday I went swimming with my daughter. I did probably 8 very slow lengths in total very stop start as she wanted to play but it felt so good. I’ve been desperate to do something but have been struggling with bleeding post op but yesterday I woke up with nothing on my pad. It restarted a few hours after but I felt almost normal and it really cheered me up.

It’s worth trying Zoladex if you haven’t already as that’s the only way I knew for sure that my endo was better in the menopause. My surgeon was delighted as my endo was not active when he did do the hysterectomy and I’m glad I continued taking the zoladex whilst waiting.

Good Luck with your journey.

Xx

Dancer1992 profile image
Dancer1992 in reply toccsmith

I’m on the Zoladex.

Thank-you for sharing. Glad to hear it’s looking up x

livvi_livvi profile image
livvi_livvi

Hi,

I am nearly 8 months post op from a total laparoscopic hysterectomy, removal of ovaries and tubes and excision of endometriosis. For me it has completely changed my life for the better.

I was diagnosed at 23 through a lap and the endo was ablated, this helped my symptoms for a short while but within a year I was back at the gynae. He tried different pills and the implant to no avail. At 25 I had another lap with removal of endo. I was then put on Prostap which helped however slowly my symptoms returned. At 27 I had another lap with removal of endo. By this operation my endo was worse and had attached my ovary to my pelvic side wall, it was all over my ligaments etc. Unfortunately, following this operation instead of my pain and symptoms reducing they got 10 times worse. The pain got so bad that I was on daily morphine to even get out of bed. I had nerve blocks and further prostap/zoladex but nothing helped. I was unable to work my full time hours but dragged myself in drugged up barely able to walk because I had no other choice. Eventually my consultant agreed that the only options were stay as I was in too much pain to function and basically bed bound or try a total hysterectomy with ovaries removed to see if it helps.

At 28 in feb this year I had my operation. Its been a rocky and slow recovery. Complicated by hormones, my age and the amount of morphine I was on. But I can honestly say hand on heart I have my life back.

Im now back at work full time, able to function in between, not on any painkillers. I can honestly say I now have a future whereas without this operation I would not have. I dont have any children and I now never will have any biological children but thats a small price to pay when I have my life back.

If you have any questions let me know happy to help.

Xxxx

Dancer1992 profile image
Dancer1992 in reply tolivvi_livvi

This is truly inspiring. I’m 27 and knowing someone else has done it and have gotten their life back. This is exactly what I want.

You truly don’t understand how much this story has helped me. Thank/you x

livvi_livvi profile image
livvi_livvi in reply toDancer1992

Im glad I could help. It has literally been so good and given me my life back.

If you ever want any advice or anything then im happy to share. Xxxx

LynneB profile image
LynneB

I’m 5 weeks post op. Had total hysterectomy plus ovaries removed. Before my op I was just like you as I wanted to hear some good news stories....they are not easy to find! My options were running out as at 41 I had 3 laparoscopies, two courses of artificial menopause injections, coil and various pills.

I have to say that so far I’ve had absolutely no regrets. Prior to the op I took co-codomol and head pads daily. Post op I stopped the pain killers in less than a week. I’m tired but not a patch on how I was before, already I have more energy. HRT patch has also been great as stopped hot flushes and night sweats. Early days but so far so good!

It’s a big decision so you have to weight up the pros and cons and do what’s right for you.

Dancer1992 profile image
Dancer1992 in reply toLynneB

Thanks Lynne. Great to hear you are recovering well and there’s a positive outlook on life!

Tothefuture profile image
Tothefuture in reply toLynneB

Hi Lynne ,

I’m just home today from laparoscopic hysterectomy , ovaries and tubes out . It’s refreshing to hear your post and I’m looking forward to moving forward for the future xx

Tothefuture profile image
Tothefuture

I am sitting waiting to be discharged from hospital after full hysterectomy , ovaries and tubes out . No longer bleeding after 5 months (yay, I feel like I am getting my life back) , less pain than I had when I was admitted. Early days I know , lots of rest to be had and no lifting !!!

I had mine done laparoscopic and I have five small wounds, that are glued perfectly and look nice and tidy at the moment . So far so good :) Keep in touch and you can follow my journey x

Dancer1992 profile image
Dancer1992 in reply toTothefuture

Thank-you, best of luck in your new future!

You have helped me so much! X

Sunflower1968 profile image
Sunflower1968 in reply toTothefuture

Hi how are you doing now? X

Tothefuture profile image
Tothefuture in reply toSunflower1968

Hi , good morning . Feeling really positive for the future . No bleeding , pain is mostly connected to gases - although I am dosing up as I haven’t got the head space to deal with pain at the moment that’s being used to deal with my partner who clearly has his own emotional difficulties !! Feeling tired but resting heavily 😁, as the other half is moved out I am calling on friends to visit every day, help and nurture me like us girls and other good friends do for each other xx. Interesting as to the write up about the ablation , I found a study saying this is unsuccessful in certain circumstances and my private consultant said the same ‘ the nhs will want you to have this but it won’t work !!!’ Wt, I refused to have the ablation and insisted on hysterectomy - luckily my lovely consultant fought my case . Also teary today but that’s to be expected . Shower time and will have a change of room lol x Thankyou for your mail

Sunflower1968 profile image
Sunflower1968 in reply toTothefuture

Hardly surprising you feel the way you do you have had major surgery and organs removed people often forget how traumatic this can be as it’s quite a common procedure. I’ve witnessed 3 girlfriends having a hysterectomy and all 3 had very different recoveries and I think you are doing amazing and I hope you receive all the love and support you need ♥️ be kind to yourself x

123happym profile image
123happym

Hi I am 1 year and 2 months post hysterectomy with ovaries, cervix and RV endo removed. The Zoladex had controlled all but the stage 4 endo and adenomyosis. By the time my hysterectomy date came round I looked pregnant! The op was fairly 'clean' as there was just the big bits of endo left post Zoladex. I had a post op complication with my bladder but am in a much better place than last year. I went from not being able to work and on a high dose of codeine to now - no painkillers, working full time. No major HRT, I'm 48 with family history of breast and ovarian cancer. I use Ovestin which is a v low dose and applied vaginally to help keep the tissues in shape 'down there'(tmi! But useful info I wish I'd known a year ago!).

Good luck with everything.

Sunflower1968 profile image
Sunflower1968

Thank you so much for raising this post, I am due to have a hysterectomy in December after trying pretty much everything else. I am almost 51 and my periods are still every 30 days which leaves me in bed for a week in all I can describe as labour type pain and flooding. My gynea is a endo specialist and has been so supportive she said because I have also have ando that the hysterectomy should really help with the pain. Like yourself I’ve read so many negative stories and I am super nervous as I am a single mum to a teenager who is also very nervous as I had a significant bleed during my last surgery. So thank you for your post ♥️

Dancer1992 profile image
Dancer1992

I’m glad posting this has helped you as much as it has me. Sometimes because of the nature of this forum, we all come on to vent to each other and try and find people who are understanding of our condition and get what we are going through.

It’s good to hear off some of those people who have had successful experiences which give us hope for a better, less painful future.

Sunflower1968 profile image
Sunflower1968 in reply toDancer1992

Totally agree, there are so many people still in pain after a full hysterectomy and I have read that endometriosis can even produce its own oestrogen it really is a persistent ugly condition! I feel for all of you endo warriors and let’s hope we are success stories and I am going to try and think positive thoughts and manifest the best outcome we can have - take care x

EndoJaz profile image
EndoJaz

Hi

I had mine 2 yrs ago. Helped with the bleeding but pain remains so now awaiting another lap to decide whether ovaries need to be removed. So I def don’t regret having it done for the flooding I had. Big decision tho

sazley87 profile image
sazley87

I haven’t had a hysterectomy *yet* but I’m on zoladex currently to see if a hysterectomy would stop the pain I’m in. I have to say it’s really reassuring reading these replies too it gives me hope. ❤️

BBBOA profile image
BBBOA

Hi. Sorry no good news story from me! Since having it 2 years ago I have struggled with HRT , multiple new allergies and menopause. I feel my health has declined considerably. Waiting for laparoscopy for possible endometriosis (return of) and/or adhesions. Also have probable prolapse. Envious of those who have found it life changing for the better! Personally wish I'd never had my ovaries removed as wouldn't have had to have hysterectomy. (Progesterone intolerant) Bah humbug! My advice would be don't do it unless last resort and if you do, keep ovaries!

Sunflower1968 profile image
Sunflower1968

Hi I’m day 4 of a total hysterectomy and endo removal, I’ll happily keep you posted on my progress x

Endo_Phoenix profile image
Endo_Phoenix in reply toSunflower1968

Hi Sunflower1968 , how are you doing now?

Endo_Phoenix profile image
Endo_Phoenix

Hi Dancer1992 I came accross this post while looking for happy hysterectomy stories. Im almost 40 and my endo was diagnosed 12 years ago. Have tried everything and have had 4 surgeries in the past. Im in a lot of pain these days and can feel that Im due for another one. Im seriously considering total hysterectomy. Im just so sick of this pain and pain meds and this quality of my life.

I hope you are recovering well if you decided to proceed with this. Would appreciate if you can update. Thanks

Dancer1992 profile image
Dancer1992 in reply toEndo_Phoenix

Hi, Great to hear from you. I am sorry that you are struggling at the moment. I am awaiting my 3rd laparoscopy in the hope that we can see what the next P.O.A is going to be. I am still hugely considering hysterectomy but am now with a new endo specialist who is I feel more understanding of my condition and more open to the idea. This is increasingly helpful. I am still at the same stage I was 10 years ago in terms of progress and pain management however I am hopeful that after my next laparoscopy, we can come up with a new plan (Fingers crossed) whether or not this includes total or partial hysterectomy.

I completely understand what you are saying about quality of life. I go through this battle almost daily and it’s really hard to manage. Especially considering no-one around you can really understand your pain. It took me a few years to come to the decision that I would be open to a hysterectomy. I think it’s something that you fight with so much and has to be a careful decision. I would do anything to improve my quality of life. (For now, I am trying to focus on a more positive mindset before my surgery as I feel my negativity towards my condition can be destructive. Not everyone will understand the pain that we go through and I think sometimes we really have to endeavour to do the little things to try and help ourselves too.) Whatever you decide is best for you, please ensure you have a good endo specialist behind you that is willing to fight for your quality of life too however this may be.

Take care x

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