Hysterectomy and endo

[Annabelannabel]

So I'm 22 years old with severe endo I've been told all my endo can't be removed because of its position. Endo is reliant on the supply of estrogen if I had a full hysterectomy would that help forfill my twenties and thirties? I want to speak to a consultant. I cant afford lap private because its too involved but can afford hysterectomy. I'd rather lose fertility enjoy my youth and adopt or whatever later than leave it and get really depressed trying to get pregnant and go through ivf. Baring in mind I work very physically as a mechanic which I'm dependent on my job and career and worked very hard to be a senior technician. And I enjoy very physical hobby sailing and I'm already missing out on so much and I'd give up my fertility for that any day. Advise would be great. I want to give it a good year before going through with this but value people's opinions in this situation with pain and disruption of livelihood/worklife is becoming very hard. Thank you 😊

[Avourneen]

It seems really odd to be told our endo can't be removed due to it's position......I have never heard anyone being told that. i have some endo that can't be removed but I am 50 and have had endo since I was 15 and am very badly scarred insisde form previous surgeries.

Lots of people do have endo and are still able to get pregnant if they have it treated quite early, so don't assume that will be really difficult. If I were you I'd go and get a good scan with an expert and have a really good gynae takea look at it and get a second opinion.

There is a much lower chance of endo coming back after a complete hysterectomy but a hysterectomy can create a lot of problems in itself , especially as you are very young and fara away from a natural menopause.

Find a good expert to see and ask very arefully about the pros and cons of different options.The most imporant thing is get a surgeon who knows what he/she is doing there are a lot of women who have had the wrong treatment at their first op and this complicates things further on.Good luck xx

[Annabelannabel in reply to Avourneen]

Hi thanks for your reply. Yeah they said they can't remove it because its on some nerves and ligaments that affect my bowel control and if they try and remove it it could potentially cause further damage and I could lose more or all my bowel control. This is what a specialist surgeon has said at an endometriosis centre.I think I'd like to get a private consultation with a specialist to discuss it with them at length especially pros and cons I don't want to feel worse.

Thank you so much and hope you're ok xx

[BlueGiraffe9]

Also getting rid of your uterus/ovaries has multiple other issues not just fertility so make sure you are aware and accept these (it's why I kept mine as wasn't prepared to deal with the long term effects of the other stuff)

[Lofty1589]

A hysterectomy will only help if you have Adenomyosis. As Endo is outside the uterus and can grow even without ovaries, it unfortunately isn’t a fix.

[Simo7]

As Lofty 1589 states Endo ISNT cured by hysterectomy only Adenomyosis is. Are you in the U.K.? If so Ask your GP to refer you to a specialist BSGE centre (Google your closest). Endometriosis also creates its own Estrogen so you could still have problems. At such a young age I completely understand that children may not be a priority now but there’s something about the female body that when your clock starts ticking you may start wanting to be fertile (lots of friends adamant in their 20s didn’t want kids hit 30 & did!) Keep your options open but most importantly get a specialist (they’re NHS) to do excision surgery. Wish you well x

[Annabelannabel in reply to Simo7]

Thank you for your reply. I am based in the UK and I'm under a specialist endometriosis clinic. That's interesting I didn't know endo produced it own estrogen but makes sense because those with endo have high estrogen and we are battling it down with pills coils ect. Thank you for your advice much appreciated.

Stay well xx

[Moon_maiden]

Hi

I’d agree with others, either ask GP for a referral to an Endo expert or pay for a private consultation if you can afford it. You don’t mention how you’ve been diagnosed. If you can afford a consultation it’s much better, you can see who you want and not end up only seeing a registrar.

I had a hysterectomy but at an age I could easily have got to natural menopause, had a lot of Endo excised. Although pain reduced where the uterus was, I still experience abdominal pain. It’s really important not to just jump to it’s definitely Endo and ignore anything else as well.

[Annabelannabel in reply to Moon_maiden]

Hi thanks for replying to my post. I was diagnosed via mri in january 2022. From what I understand that's all I have and nothing else lingering because I have a lot of issues with my bowels and I have been told it could be more than endo but nothing ever comes up on tests. However my symptoms suit where my endo is positioned and why I would get them. I just don't want to be battling with this till menopause it takes over your life and not to sound daft but I simply don't have the time for it. I'd rather just get it all out and be done with it so I can enjoy the next 30 years.

[Moon_maiden in reply to Annabelannabel]

Good old tests, I don’t think it ever does with Endo involved. Didn’t show on my MRI but loads there.

It’s a difficult decision, I knew early on I didn’t want children anyway. You don’t sound daft at all, practical and wanting your life back to what it was. Absolutely nothing wrong in wanting that 🙂

Edinburgh Uni have been doing a lot of research and found Endo acts the same way as cancer cells. They’ve been testing a cancer drug with success and are doing further studies this year in Edinburgh and one of the London boroughs. If you are going to wait a year they might be much closer by then to getting a license for the cancer drug for Endo. Potentially closer to being able to reduce Endo and pain.

[Annabelannabel in reply to Moon_maiden]

I know they are so unreliable! I'm surprised mine showed up on mri they didn't tell me the results for 6months aswell lol. I've never wanted kids it doesn't suit my lifestyle and the things I've committed to for majority of my life. Plus the idea of pushing a human out of me just scares me lol. Thank you for your reply I know a lot of people say keep your options open but I'd rather enjoy my life to menopause than be pretty much put through one my life till then. I want to enjoy my life and hobby and not lose my career. Maybe a partial hysterectomy I could speak to a specialist about privately. I have read endo is a to reason to have one.

[Marcia71]

as has been said a hysterectomy is not a cure for endo. For one endo grows outside the uterus so removing it makes no difference. And endo produces its own oestrogen so even taking ovaries doesn’t necessarily stop it growing. Best treatment would be having all endo excised at time of hysterectomy. And unless your ovaries diseased they shouldn’t take them. And if they did you would need hrt as your so young. You’d need combined hrt as an endo sufferer and whilst that is best choice for not causing endo to grow back there are no guarantees.

I’d say ask for a second opinion with an nhs bsge centre with an endo specialist. If in the meantime you can pay for a scan with a specialist scanner trained to spot endo that will give you more information to take to that appointment and then you can see what your options are.

[Gardenist]

Hello Sorry to hear you are suffering. From my experience the surgery is not to be taken lightly. I had a hysterectomy at the same time as having endo removed but kept my ovaries. It took a year for to be back to normal after the op. I could hardly function because of fatigue. The endometriosis grew back after 2 years. I've now had my ovaries removed and I would not wish the early days of surgical menopause on my worst enemy. It took around 6 months to not feel like I wanted to not be alive and a further 6 to feel good. NHS are not set up to prescribed the levels of hrt that younger people need. It is off licence and so you need a consultant to prescribe it, except you can't see one. It's cost thousands so far in ongoing private treatment to get what I need. And then the hrt is out of stock in pharmacys all the time causing further problems. I do feel really good now even though I have to take 3 types of drugs every day cant drink alcohol /caffeine/ or stay up late in order to feel that way. I would encourage you to do lots of research. Get lots of opinions and a solid plan of action before you make any decisions. I wouldn't underestimate the limitations of the NHS in its current state. Hope in the meantime you find something that helps you with the pain. I found making lots of lifestyle changes like anti inflammatory eating and sleep hygiene training and a tens machine helped me to a degree.