hi all, I am just about to turn 45 years old and I have had endo since I was 20.
5 laparoscopies over the years, hormone treatment, several pills and I’ve just had my coil removed as I still had periods etc every month.
I am at my wits end now, but I’m wondering if a hysterectomy at 45 is a good idea 🤔 has anyone had a hysterectomy in their 40’s?
Thanks ladies, big love 🙌
I haven't had a hysterectomy yet but just turned 44 and am waiting for one. I was only diagnosed with endo (and fibroids) 2months ago, even though I've had heavy, painful periods for years I just assumed it was normal and got on with it as best I could. Only went to my GP about it in June and things have moved pretty fast since then. I honestly can't wait for the hysterectomy, I know the recovery will be tough (also complicated by having endo in my lungs) but I'm hoping it will be a fresh start for me. Maybe I'm being naive though 🤔
Sounds like you've been through a huge amount already so understand your concern but you sound like a tough cookie! All the best x
Thank you for your reply. Good luck with your hysterectomy. It seems that most people say it’s the best thing they ever did.
I think I need to bite the bullet and get on the waiting list. X
Hey,
Endo runs in my family with all of us requiring treatment and multiple surgeries throughout our lives. My nan had a hysterectomy at 42 l, and my mum at 48. They've both said this was the best thing to ever happen to them, yes some menopausal symptoms can be difficult, but for women who've lived their whole lives as sufferers from endo , they said this was nothing.
Thank you so much for your reply.
This is so my family… great grand mother, grandmother, mother, cousin and myself so far. Hope my daughter avoids it - it’s not something they jump to treat.
Hi I had a hysterectomy 3 weeks ago and I'm 44. 8 years ago I had surgery to remove endo from uterus, cervix, ovary follopion tubes and bowel. They ended up removing one ovary and follopion tube. Have had lots of issues since with other ovary which to cut a long story short had fused to my rectum, so had hysterectomy 3 weeks ago, had it all removed and the adhesions. Had some stents put in my bladder and kidneys which was removed last friday. Everyone is different but I'd reached the point where it was affecting every hour of my day! Much love!
I had mine at 35. I’m 37 now. It’s awful having to be on hormone replacement and I wouldn’t suggest it to anyone other than those seriously needing it. But once we get balanced it works out better. Also, at 45 you’d be in and around perimenopause/menopause, so they’d provide hormones to balance you out quicker than if you go through it naturally. I know it’s shocking but true. I had a full hysterectomy- my consultant had been in his job 25 years and was an Endo specific surgeon and hadn’t see anything like it. It was by the grace of god I kept my bowel and bladder. But that involved losing my right ovary too. Fair trade?
It does take about 18 months to be fully back on normality but recovery I’d say is about 12 weeks to feel perfectly comfortable and ready to resume activities at your pace. But this depends on many factors such as surgeon skill and type of surgery. You should be given oestrogen and progesterone after, and then vaginal estrogen (which for some reason has to be asked for) and sometimes testosterone in micro amounts. That’s the complete hormone profile. I’m two years in to the journey and I’m waiting on testosterone.
I did it because I didn’t want repeat surgeries as a fear of hospitals cripples me, and I had to children in my late teens due to my fertility waning then and we had to now or never act.
It isn’t for everyone, but it does help in some if not many cases.
Wow, thank you so much for your reply. X
Hi, I’m 48 now but had my total hysterectomy at 46. I had stage 3 widespread endo and adeno. Hands down it’s the best decision I ever made! Wish I’d done it sooner. Recovery took a while (probably a good year to get ‘back to myself’) but boy was it worth it. Feel free to DM me if you have specific questions. Good luck!
Hey, great to hear a good news story, thanks for sharing. Did the op affect your bladder and did you have HRT?
I’ve been on tibilone since the op (and was on it for a couple of years prior whilst on Prostap). The only effect on my bladder is I’m up once or twice on the night to go to the loo. But that’s a vast improvement on my quality of life.
I'm 32 in November. I am pushing for a full hysterectomy this year as I am at that breaking point.. but I completely understand your reservations xx
Hello
I was diagnosed over 20 yrs ago. Many laparoscopy surgeries, pre cancerous cells on cervix that didn’t respond to freezing so had to be lazered, many cyst removals, multiple hormone injection treatments and hrt. Finally after a year and a half of zoladex, prostap and hrt and bleeding for 7 months solid I had a hysterectomy last October aged 49. Had to have emergency bowel surgery and colostomy bag fitted during surgery as bowel was stuck to womb with large plaque of endometriosis. This will be reversed eventually.I could never have children, I miscarried 5 times and had a ruptured ectopic. They only found the reason after the hysterectomy, that I had a “ bumpy” womb. It was kind of cruel to find that out after so many years of hospital visits, why they hadn’t found that earlier I don’t know, but I got a cancer all free confirmation in January. Currently on evorel hrt for another 5 years so it will be 7 years all together of hrt. Works well rarely get hot flushes. From the gynaecology side doing great best thing I did, bowel side not so great, me and the little gremlin I call the stoma are not friends. But he’s a visitor not a permanent resident so we have to live together for a while yet, I hate him, he doesn’t behave well lol! All we can do is trust those who are caring for us, weigh up the information find what’s best for our situation and go from there. Best of luck.
You really have been through it! Well done for staying as positive as you can. Good luck with evicting the unwanted lodger 🤣😘
in a similar position at 43 after 4.5 years of overactive bladder and chronic UTI. Need HRT but adenomyosis does not like it and I’m sure is the underlying cause of my bladder pain. Just waking up after a night of horrendous period style cramps mid cycle and wondering if the pill is worth the risk (I have aura migraines occasionally). Love to hear from anyone in midlife who has had a hysterectomy- without removing ovaries or with.
I have migraine with aura and was told HRT is fine as long as it’s patches. It’s helping me so far.
I had a hysterectomy at 32. Best medical thing that ever happened to me. I was lucky I already had two children so it was really only the choice between having more children or less pain. I went for the less pain option and with hormone replacement therapy I felt great.
I only know 3 people with endo in person and they have all had hysterectomy. My aunt who had it so bad she had hysterectomy at 29 and has been pain free ever since not one symptom she is now 58 but she has got breast cancer from being on HRT for 20 years. Also has osteoporosis from havi g no reproductive system but she is so well. Also another person a nurse she had a hysterectomy she 42 and she is also living pain free and said she has her life back hers as only been 2 years and finally a friend of a friend she had a hysterectomy’s when she was 31 and she is still in lots of pain but I don’t no her well so don’t no the full story! Am saving as I 100% want a hysterectomy I can’t keep goi g through this pain and see g how my aunt is, is good enough for me. Am 36 ideally I would want to be over 40 but I probs will have one within the next 2 years! Have a look at Anna’s wood yam cream am thinking of trying this
I had a full hysterectomy and oophorectomy (removal of ovaries) when I was 28. I'm 35 now.
My older sister waited until she was in her early 40s . She is 46 now. She had is extremely bad. So much so that they couldn't remove all of it as it has attached to her bowel and spine and other organs. She waited years for help in NHS. Even being told it was "all in her head" and told to see a psychiatrist. The consultant who did the op was horrified at how bad it was. She took ibuprofen for years and now due to that had a whole in her colon and prolapse.
My youngest sister is holding out because she wants more children. She is 30 now. She is in serious pain each month and can't eat much or she throws up. She tiny as it is.
Endometriosis runs in our family, with no actual recognition from our GP or local hospital I was the only one who took things into my own hands and saved to go private and see a specialist.
I've been on tibalone and Estradiol vaginal tablets now for fair few years.
I was on paracetamol and ibuprofen, then mefanamic acid and tranexamic acid. I was burning myself with the heat needed from scolding hot water bottles. Would black out from pain, dizziness and have to be in bed because Id collapse. I would get a fever and violent sickness. Would also have diarrhoea or constipation. I would be doubled up cos of the pain in my back. I was given codine at one point, and an anti sickness tablet.
Under investigation by a local hospital gynecologists in my teens I was told even if they did a laparoscopy and found something they couldn't do anything else. (Load of absolute twodle!) I wasn't offered any options. Went to see another gynecologists and was told to have coil; but that because my womb was tilted and I couldn't even use tampons I would need to be put under to have it inserted and removed. That sounded wrong to me, especially as I had already done my research and knew the coil would make my situation worse.
I went to see a specialist, he informed me that the coil would have been inappropriate. Offered me option of laparoscopy with lazer, which would give me maybe 4 or 5 years relief, but as my older sister had had this and it hadnt worked he said it may even be less time than that. Then I'd have to do it all over again.
Or I could have a hysterectomy. But as my symptoms were such that it was likely to be attached to my bowel and intestine, if he removed it he may have needed to cut away some of the tissue and as such may need a colostomy bag, either temporarily or worse case permanently.
He done scans internally, but found nothing. And had my nhs info on ultra sound with nothing showing, but wasn't surprised. He said that it was probably at the back and as such wouldn't show unless he actually went inside.
He trialled me on prostap injections to have an idea how my body would react to a hysterectomy, and was please with the results.
I had the operation in November 2016. Few weeks after my 28th birthday.
He said after the operation that it wasn't as straightforward as he had planned, that the endometriosis had covered all the back of my womb from bottom to top and had travelled up my fallopian tube and onto my 1 ovary, and was doing same to the other. That it was millimetres away from my bowel and intestines, and would have attached in month or so time. Removing it took a bit more time due to the amount there.
Afterwards I was on nothing for a little while to starve off any remaining. Then placed on HRT, this had been changed by my GP (who got it wrong...and gave me a stupidly low dose) as my tablet went out of distribution. I had to go back to specialist again privately for him to sort this out.
Honestly I don't regret my decision. Its not always been plain sailing. But compared to the alternative, it was a no brainer for me personally. I have now got a life with no pain. No dread of the month to come. No having to feel dependent in others to look after me.
If I had left it...I would be in a horrendous place.
hi lovely, yes I just had a hysterectomy bk in March and a wall repair as I had a uterus prolapse and my wall was coming down. I had a laproscopy last year as well looking for endometriosis, unfortunately they didn’t find it but I doubt the skills of my NHS consultant at the time as she couldn’t even see my prolapse that was very much their at the time. So if she didn’t see the prolapse that was v visible she wasn’t going to find the endo and I’m too scared to go get another on the NHS but I don’t have money for private 😢. What are your concerns about the hysterectomy?
I didn’t have a choice in the end my consultant said the only other option was mesh bit that it would probably fail so I said no just do the hysterectomy. It’s been difficult, I’m only just starting to get better, I only just started walking recently without use of a walking aid and I’m only still doing short walks and I have to be careful what I pick up and I am still tired and have to go for naps in the day but it’s not as bad as when I first had it done.
If you want to ask me anything feel free to message me.
I’m also on Facebook and tik tok where I have discussed it in detail
Hope that you are ok x
Hiya,
Thank you for your reply. Sounds like you've also been through it 
Good luck with the rest of your recovery.
My concerns are mostly after the surgery to be honest. Despite being in some form of pain every day, I am pretty active. I run my own pet shop and walk my dog for an hour every morning, and I don't have any staff so do it all on my own.
I'm worried about the length of time it will take to recover. But i know i need to bite the bullet and get it done so I can have a better quality of life. x
I see, I’m 41 and I’m not in best of health, I have fibromyalgia but it’s bad, so my pain was pretty bad. I had to have a lot of drugs and a mix of them after surgery. I was in 8 days but I heard that most ppl are on a day. I couldn’t walk up and down the stairs for roughly a week, I was so scared too, the pain wasn’t too bad straight afterwards. Constipation was bad though and that was very painful and upsetting. Trying to get your bowels working again is a pain. It’s mainly tiredness I would say, that’s the worst, pain wise after in recovery I had just dull pain I couldn’t bend for a while as I would have these sharp painful pulls and thumps that was upsetting. Yes, I’m not sure when you say you are active and walk a lot, I might be wrong but don’t think you would be able to walk straight away not for a hour walk anyways most definitely not. 😞 you have to give your body a bit of time to repair it’s a big surgery and it does take it out on your body at first, I think it’s the shock to your body. If you feel you need to do it and you have no choice I would say do it but if you don’t have to do it I wouldn’t. I only did mine because I had no choice at the time x
Poor you! Sounds awful.
I want to be in less pain every day, and want to sleep better at night. I don't want anymore endo treatment (which i know a hysterectomy isn't a cure) but most people do say its the best thing they have done. Its so tough, i need a crystal ball lol.
I get it, I had prostap for I think it was 9 months, I had 3 injections for my stomach/pelvic pains (which I think are endo) and they took it out of me. I also put on a lot of weight. Hopefully if you do get the hysterectomy done and be easy on yourself recovering it will take some or hopefully all your pain away even if it’s just for a while 🙏🏻 yes, they say it’s not a cure but I have honestly had a lot less pain and I had my surgery end of March. Whatever you decide to do I wish you all the best and if you update us we will be here if you need any advice or tips afterwards x
Thank you so much 😘
Hysterectomy at 24
Hysterectomy 
Endo following hysterectomy 
Hysterectomy 
Radical Hysterectomy
