Endometriosis UK

Positive Story :)

I just thought as I have found this site so very helpful over the past few months I would post my experience in the hope of giving others in my position some reassurance that there can be positive experiences. It's quite a long story so sorry about that!

I have always suffered with heavy periods, from the age of 12 and painful too. After being blessed with my beautiful children things got worse, especially after my 2nd child 6 years ago. Things got slowly worse and came to a head in 2012. Heavy, constant bleeding, anemia, headaches, mouth ulcers, back pain, sciatica, extreme fatigue, severe ovulation pain and constant pelvic pain. I tried various pills and treatments, was tested for a whole host of illnesses, including MS, then had a coil which made everything worse. I went on to have a laparoscopy in October 2013 which found adhesions and endometriosis, I was sterilised, had endometrial ablation plus removal of the adhesions and endometriosis. After the initial recovery I had a few weeks where things weren't too bad, then my periods started again and things just went from bad to worse. I have had huge amounts of time off work, a job which I adore, and at the start of this year was at my lowest point. I then had the zoladex implant, the change was almost instant! Yes it didn't get rid of all my symptoms and pain, I gained weight and suffered mood swings but the pain was greatly improved. It was then decided that the only option left was a hysterectomy with removal of my womb, ovaries, tubes and cervix. This happened 3 weeks ago now. I am now well into the recovery and despite a slight infection set back I feel amazing! I can't lie the surgery was more painful than I ever imagined, made worse by the doctors messing up my pain relief, I had nothing for 3 hours after being bought back onto the ward as the doctor had not prescribed anything for me! Despite the not so great experience in hospital I am so glad I did what I did. As I am only 32 it was a huge decision and the surgeon said he had never performed a total hysterectomy on someone so young. The fog of fatigue lifted within a few days, I've had not one mouth ulcer or headache, back ache has gone and I feel amazing! Yes there is still pain from the surgery but I am taking less pain killers than before the operation! I can finally see that my life is going to improve and therfore improve my children's life and my marriage, thankfully my husband is and has been amazing and there is no way I'd have got through this without him! To celebrate we have done something we've wanted to do for a long time but couldn't thanks to my health and bought a puppy!

I just want people to know that yes a hysterectomy is a huge big deal but it is not the end of your life! I am now on HRT which I will be until I'm 55 but I feel it's a small price to pay for having a life! So many people filled my head with doubt and horror stories before I went into hospital but I went with my instincts and I'm so glad I did.

Trust your instincts, you know your body, fight and know that there is life after with the right treatment. Whatever the treatment you need go into it with an open mind and try hard to stay positive, yes I know this is not always possible and I have had lots of dark moments, not helped by people's negativity!

Good luck to all of you on your journey back to a pain free life.


4 Replies

Thanks for this, just turned 30 will be making the decision myself in a few yrs. Lovely to hear a positive story from someone of a similar age. Hope your recovery continues to go well. Let us know how you get on further down the line. Congrats on the puppy - it's on my wishlist too ;-) xx


Thank you. I am sure things will work our for you in the end, one way or another. I feel so happy 😊. I just feel everyone has so many negative stories it's nice to hear something positive, it's so hard to be positive when you are in so much pain all the time. Good luck with your road to a pain free life xxx

1 like

Hiya so glad you feel great! I'm 42, separated, i have two wonderful children 15 &17. I have stage 4 endometriosis with multiple severe adhesions on bowel & rectum. Constant pain off work since may with depression through it all & this week my gynea told me she would do abdominal hysterectomy remove ovaries & bowl adhesions. Shes getting a team together with bowel specialist etc to minimise my risk of having a colostomy bag... I didn't know wether to kiss her or cry. It's a big risk (was informed) & I've been told I will have a good scar as I'm to be cut sideways & up down but I'm prepared to do ANYTHING to stop the constant pain chronic fatigue & no life for the last 2 years. 13th august i have my pre_op so hopefully by christmas it will be all over..Look after yourself & here's to your new life with the puppy & without endo xx


Cassimia - wishing you all the best of luck with your surgery. It sounds like you've been through such a lot. I know the months before surgery can be an anxious time. Try and concentrate on other things, even get Xmas sorted super early so you can come home from hosp to a festive environment and in the meantime it would keep you occupied.

I was told high risk of colostomy too last time. Something like 1/20. I was a mess, totally frightened. I ended up being fine, however whatever happens, your body is surprisingly resilient and will deal with it - most colostomies are temporary too so that is positive.

In terms of risk my doctor recently said even though the bowel surgery was risky I'm actually more likely to get run over by a car and this put things into perspective for me!

Good luck, hope everything works out for you xx


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