Endo back 4 years post hysterectomy

by Elaine
(Australia)

Following a referral visit to the gynaecologist with severe bleeding and very bad pain I had endured for a few years (never did quite trust doctors) I was told I needed an immediate hysterectomy.

I am writing this 4 years later, I came to the website because the deep dragging lower back pain, lower stomach ache and pain through my legs that I had always associated with period pain is back with a vengeance the last couple of days.

During the surgery I also had an emergency bowel re-section. They told me the endo was almost totally through the bowel.

My recovery was a long one due to depression (maybe a combination of 7hrs under anaesthetic, sudden hormone imbalance, and the understandable & rational grief I now felt at never being able to have a child). Antidepressants however worked almost immediately when I did submit and take them after 6 months of severe anxiety and depression. I only needed them for about 4 months.

I did my research then - while recovering. I only wish I had done as much research prior to the operation.

I would NEVER have had a hysterectomy if I could turn back the clock. My surgeon told me the hysterectomy was urgent and gave me a date for surgery a week later. I was shocked, scared, in pain and trusted the professional.

However the surgery may have saved my life.
I didn't know much about endometriosis then, I always thought it was just IBS. I wonder if a diet change would have changed my outcome had I been educated at the age of 16 when a doctor first tested me for Crohn's disease. I would advise ANY WOMEN TOLD THEY NEED SURGERY DUE TO ENDO - Try a change of diet first!

And learn about the disease and your options and how to deal with it. A hysterectomy doesn't necessarily cure you, so why do it? A hysterectomy also causes its own issues.

Sorry to be cynical but if you go to a surgeon they will want to cut! It is what they do. Explore every other option first if you possibly can, & DO get a second opinion, even if they say surgery is urgent.

I am now (usually, but I do get tempted! )on a low fat, red meat free, gluten and lactose free diet. This has helped immensely.

I also take black cohosh, which has proven to work (I ran out of them and thought, 'well maybe I don't need them any more,') My husband was the first to notice my mood swings and anxiety returning, but the hot flushes returned soon after.

So I take black cohosh daily and thank goodness it works for me as far as controlling menopause symptoms. Now I just have to figure out whether the black cohosh is feeding the endometriosis? And if it is endometriosis back again?

We give sex ed in schools. This should be part of all girls education. Not necessarily the detailed specifics of this disease, but educating our young women to question and research and be responsible for their own health. (they are so lucky to have access to internet & know how to use it).

I hope this helps ANYONE.

Now,
where can I get help on what to do next? What is the latest research? What helps keep endometriosis at bay post hysterectomy?