Hysterectomy and Endo

[EmilyJoannexx]

Hi I had a TLH in 2017 at 32 years of age, due to my Endometriosis, during the last few years since I’ve had niggling pains but the last few weeks I’ve been having chronic pains in my left or right sides and my back and a feeling of heaviness all the same as before my hysterectomy. My Dr has said she thinks my endo has come back and possibly attaching to my scar tissues from all previous surgeries. Has anyone else had this? And able to get it sorted? I hoped I was getting the other side of this disease and now I feel I’m back to square one!

[Waggymumma]

Hello, I’m so sorry your pains have returned. I am only 6 days post op TLH 😬 I have been warned that my pain could return. Did you have all of your Endo excised? Was it done at a BSGE centre? If not I would ask your GP for a referral (which I needed to really push for!!) Do you still have your ovaries? If so maybe they could be causing a problem? Maybe a scan for cysts or something?

It may be worth following one of the diets (Endo diet/Anti-inflammatory) to see if u can get some relief?

This is what I’m most scared of happening, and I really hope you get some help. 🙏💖🌸 x x x

[EmilyJoannexx in reply to Waggymumma]

My consultant said he removed everything and no I’ve no ovaries or anything. I had an abdominal scan the other week and they said unfortunately this won’t show any endo only a laparoscopy will. Obviously I was discharged from gynae straight after my hysterectomy so my GP said i will have to start again.

[Gingernut74]

Hi,

I had a tah 2 years ago & im 46, after a few months of the op I started getting pain back, then had a diagnostic lap in Jan this year.

They removed a few areas of adhesions & separated my bowel from Stomach as had glued to it, but this should’ve been done at same time as tah, after this lap a few months later I started getting pain back again - made to feel like it’s all my head as everything been removed so why am I getting pain back again, but the more surgery you have the more adhesions are created, I’ve also had 2 c-sect’s so that hadn’t helped me either.

Wondered if I was so stressed that I was causing this pain myself?? But have gone back to having reflexology & reiki & has helped me immensely.

My consultant isn’t much help - I asked if even after the menopause will I have endo pain in my 50’s, 60’s & 70’s & he replied ‘I cant answer that’!!! 🤷‍♀️🤷‍♀️, & he also said you maybe be someone who has a low pain threshold or adhesions just grow back again quickly!.

Trust your instincts as you know your own body,

Could try cbd oil which has helped me too?.

Good luck & hope you get some relief & answer soon.

[bighug]

Hi, sorry to hear you’re suffering again, this disease is relentless! 😔 I had a total hysterectomy 2018, my surgeon decided to leave my ovaries in after removed all visible endometriosis on them. Unfortunately just a few months later it was back, so I had to have them removed 7 months later. Then again, only a few month later after that, I started with the usual pains especially lower back pain. After several gp appointments and different kinds of pain killers I got a MRI scan on my lower spine, resulting in them saying I’ve got signs of osteoarthritis on my lumber spine, I asked if they saw any more endo, they said they weren’t looking for any. I don’t know if they have investigated enough now or if I’m just paranoid whenever I get pain in my pelvic area, you started to feel it’s all in your head, but you do you your own body, and it’s strange that the pain is worse certain times almost like a cycle again! I’m like you, feel like I’m back at square one 😕

Hope you get some answers, and relief.

Take care 🤗

[EmilyJoannexx in reply to bighug]

I feel exactly the same!

[Marcia71]

I had TAH and BSO but done by general gynae who didn’t remove endo so I had way worse problems after. After 3 further ops - last one being excision of endo from vault at BSGE I’m finally feeling better and out of constant pain. As you’ve had treatment for endo That hasn’t worked you are eligible for referral to BSGE centre and your gp can refer you. It’s to the centre directly and via nhs England.

[EmilyJoannexx in reply to Marcia71]

Oh really? That’s interesting I’m going to mention it too them as I’m struggling feeling this pain all over again having hoped I was on the other side

[Marcia71 in reply to EmilyJoannexx]

I know it's horrible but hysterectomy isn't a cure for endo - despite what doctors tell us Hope you can get some further help.

[EmilyJoannexx in reply to Marcia71]

Thank you