Endometriosis after total hysterectomy 😞

I had a total hysterectomy 7 years ago and gradually each year my symptoms are slowly returning. This week has been the worst so far. Does anyone else feel the same after a full hysterectomy? I'm 31 and would love to chat and share experiences for some support x

[Emma-endo]

not had a hysterectomy but had a lap two years ago.. Same sympton have returned this week and signed off work. Losing money, in pain with no where to turn.. Feeling your pain!

[Heartschamps15]

I had a tah 6 years ago for ovarian cysts and severe stage 4 endometriosis. For the first year I felt great. Then the pains started again I've spend the last two years in and out if hospital constantly due to the pain and how it's affecting my bowel and bladder. I've been told that I have IBS and other functional bowel disorders all scans mri bloods etc haven't shown anything. Im not sure that the problem is with with my bowel I think that the endometriosis has grown back on my bowel and bladder. I'm tired constantly severe lower right abdo pain and lower back pain, vomit regularly, suffer excessive sweating, constant rashes all over my body, urgency to pass urine and urinating more often than normal especially through the night, weight gain and many more symptoms. Does anyone know if endometriosis can grow back after a total hysterectomy?

Thank you

[Heloo85 in reply to Heartschamps15]

Yes it can! Thats why they say theres no cure. A hysterectomy isnt a cure. Three things can produce the estrogen endo needs. You pituitary gland, fat cells and endo itself. Did you have deep infiltrating endo? It tends to be more aggressive! It also grows its own blood supply. I had a lap (complex surgery so one treatment down from total hysterectomy) in december and mine was back within a month! I too am the same. Peeing during night, severe constipation, impactions! Luckily my Gynae knows its endo. Im on zoladex (so in a chemical menopause) and im no better!

[Heartschamps15 in reply to Heloo85]

Thank you for your reply. I'm going to make sure I get thoroughly checked for endo. Yours grew back so quickly. I'm not sure if it was deep I only found out about two months ago that it was stage 4 and very severe as my gynaecologist never told me it was only when my GP was going through my previous ops that the subject came up. Can you keep me informed on how you get on if that's okay please

Thank you

[Heloo85 in reply to Heartschamps15]

I will do. It probably was deep if they classed is as severe. I know and i couldnt believe it. I had my surgery on 1st of december last year! On 27th i got out car and the pain put me on my knees. Then about 1 weeks later i was so ill. Nausia, couldnt keep awake. Drs got me straight in and was diagnosed with severe constipation with impaction. Took the laxitives. Poo was back stick thin. I felt ill for about 2 weeks. Period was painful (which i never had before surgery). I saw Gynae and i was about to tell him how poorly id been when he more or less said "oh good youre better, take pill back to back because it will come back, ill see you in 3 months" and hushed me out room. So same day i went to Drs, got the pill, started it. First month was ok. Second month literally spotted with breakthrough bleeding everyday. Bam. Bowel impaction again. Seen Gynae. Told him. Hes like yes i was expecting it to come back. Ill send you for an ultrasound but we aint rushing, because i dont want to put you through surgery again yet. Ill put you on Zoladex. Had to wait for period to be given first injection. Bam. Another impaction. Started zoladex on last day of my period, week later had another break through bleed and bam. Crippled. Month in. Bam another impaction. So im currently between a rock and a hard place. I know my Gynea is going to suggest a hysterectomy, but i already have early onset heart and bone disease. I dont want one. Already had complex surgery. My Gp doesnt know what to do. Its a buggar of a disease!

Xx

[Embob]

Hi Ninae

Your post just appeared after I posted something really similar. I think my symptoms are returning too. I was 36 when I had my TAH and now I am 39. I chose not to have children for this reason (among other things). I always knew there's a risk of it returning (I also had adeno, fibroid and periods from hell so all is not lost!).

I bloodywell wish there was an answer....

E x

[Hidden in reply to Embob]

So do I!! We've suffered enough already! Now it's back again 😣 Are you having any treatment or medication now? Have you had any surgery since your hysterectomy for it? Xx