Endo . . . What can we do?

[JOSANDY40]

Myself from age of 10yrs. Symptoms finally diagnosed at 26yrs. A major Op to save my life with a bowel blocked! Yes Endo!

Danol next!

Several yrs later Danol damaged my Pancreas, gave my Pancreatitis! Went onto Zoladex, a yr to get a ok with it but able to work and enjoy sex.

After the next lot of Pancreatitis

Then heart enzymes changed, so on blood pressure tabs.

Then told after 8yrs that I had inflammation of brain caused by Zoladex longterm use!

Since a Lactose, gluten free intolerance I also have a issue with large amounts of food including fatty or meat food.

In the last yr I find alcohol more difficult. I am drinking only Processo or Champagne cos everything else is too difficult.

I tried enzymes replacement but I just got unwell.

So little food but 6 time meals and increasing water.

[EndoJaz]

It’s never ending, my bowel gives me so much pain. Constipated all the time, have to take cosmocol and eat seeds and weetabix to force it through. Twisted bowel they say after failed colonoscopy and won’t do anymore surgery due to having too many for endo. No light at the end of the tunnel. I’m too scared to try zoladex as I don’t do well with most meds and because it’s an injection it scares me of the side effects. Don’t think it’s meant for long term use, 8 yrs!! Hope you are having a good day today 🥴xx

[JOSANDY40 in reply to EndoJaz]

Hi, Yes all the same with me as you. Zoladex is a great drug. Made life so much better.

I miss it but can't take it anymore! About a year to feel its total benefits, Generally they only prescribe it to max of 2yrs.

My Endo was serious in my lungs too so it stopped lungs bleeding every mth. I could just about manage being that career woman.

Thankfully I could which in later years I was able retire earlier.

Still have pain and issues with Endo, Still issues with the bowel but it's about a 3rd of the time not everyday and not as extreme. Take Morphine about 5 days a month. The rest of the time simply 2 to 3 Ibrophine or nothing!!!

Physically cos of the bowel I tend to ear 6 tiny meals a day. Physical work like vacing or lifting makes it worse.

Can't have anymore Ops unless I am prepared to lose perhaps bladder or bowel. So a Histo isn't worth considering.

At the moment they tried 4 th attempt at Colonscopy. Had various CT and MRI cos of bowel issues with nausea. I have a ridged bowel, damage from Ops, Diverticulitis and Colitis.

Have some cysts and polyp in womb which is concerning si waiting to hear the next step. The tiny cyst on my left ovary has not changed in 7yrs so they aren't worried about that.

The hardest thing for me is doing this alone with no partner, friends died so now I need to start again with finding new people.

[SavageGold]

Thank you for the warning. These zoladex injections are what the Gynae told me she wanted to do next. I always felt they were only a short term measure as switching off your hormones is like blocking up a dam without an outlet: it'll break at something. All hormones rely on each other. I'm sorry you're going through this