In her own words from Sally, ‘Endometriosis has stealthily stolen my health, energy, fertility, and capacity to work full-time across the span of the last 15 years’
This is Sally's story .....
I remember going out with my sister and one of her friends over 20 years ago and hearing about how someone they knew had this terrible disease called endometriosis. They talked in hushed voices about the horrible hormone treatment she had and how she probably wouldn't be able to have babies.
Later I worked for an international pharmaceutical company and my close friend marketed a hormone treatment for endometriosis. She would tell me horrible stories about huge chocolate cysts and the side effects of medication.
I was young and bullet proof and thought that would never happen to me!
By the time I was 25 years old I was having terrible cramping with my periods each month. Sometimes, I couldn't get out of bed. I remember missing a presentation I was supposed to make for a work conference and how unimpressed the (male) managers looked when I finally scraped myself out of bed and got to the conference room. There was absolutely no understanding.
Another doctor (female) said to stop worrying, cause even if I did have endo, "50% of women with endometriosis can still have babies".. seems she didn't care about my pain. Needless to say I did not return.
Eventually, doctor number five actually listened and ordered tests from least invasive to most invasive (laparoscopy) in order to identify the problem.
The least invasive tests indicated nothing, but the laparoscopy did show endometriosis (early stages) and it was removed, except for a patch on the bowel which he did not feel he could safely remove.
The surgeon suggested I go on Zoladex (inducing menopause) after I come back from a holiday I had planned. He didn't explain what leaving endometriosis on the bowel might do to my health in the long term.
While I was on holiday I got pregnant and didn't realize and went onto Zoladex. I felt terrible nausea and so we didn't continue the Zoladex treatment - but shortly after discontinuing discovered I was pregnant!!!. I was shocked, worried (would my baby be ok considering I had taken Zoladex) and delighted.
It turns out the Zoladex did not harm my baby. She is now a beautiful 10 year old and I was also lucky to have a second child (son) who is now 8. After the birth of my second child 8 years ago, my endometriosis pain returned with a vengeance. At the time, I didn't realise all my medical problems were caused by the endometriosis.
I would have terrible pain when using my bowels, like someone was pulling my insides out whenever I had my period.
Over the last seven years I bled cyclically every month with my period from my bowel, plus experienced terrible bowel pain, tearing pain in my lower left pelvis when I walk, diarrhoea with period (and now 3-5 bowel movements per day). I also had bladder problems including pain in my urethra (like something sharp is stuck there), urinary urgency and frequency - as if I have cystitis but urine analysis shows no bacteria in the urine.
Added to these symptoms I also suffered extreme debilitating fatigue, fogginess and anxiety (when I have these flares of bladder problems - usually every month or two and lasting 2-3 weeks), pain radiating into my legs, lower back pain, and the loss of three more pregnancies with my husband.
I have had a cystoscopy to check out the bladder problems, but nothing showed up. I had a colonoscopy some years ago, but nothing showed up. My GP (not my original one from 10 years ago as I moved cities) and I have hypothesised perhaps this is endometriosis related but I didn't want to go on Zoladex again as we have been trying for a baby.
Over the last 4 years, the symptoms had all been worsening, becoming more frequent, more debilitating and no solid answers. I wondered if the problem was in my head and should I see a shrink? This year I happened upon a new gynaecologist who was helping investigate my pregnancy losses.
The good news was there were no genetic issues. However when I told her the long story about my symptoms and mysterious health problems- she definitively stated "that's endometriosis...it sounds like you may have it on the bladder and that it is (still) on the bowel".
I didn't know for sure whether anyone got endometriosis on the bladder. She told me that it was possible and also treatable surgically. She ordered a barium enema to have a look at the bowel, but it showed nothing.
Nevertheless, she referred me on to a surgeon who specialises in bowel endometriosis surgery (in conjunction with a bowel surgeon). He had me undertake another colonoscopy with his preferred bowel surgeon (who specialises in endometriosis) and sure enough- he found endometriosis in my bowel wall.
He tells me it is a rare complication of the disease, not seen very often. I immediately went out and bought a lottery ticket!! perhaps I will chance a win there? I am scheduled for surgery in July. My three surgeons are planning a level IV excision of endometriosis off the bladder (and anywhere else they find it) plus a bowel resection. The head surgeon is optimistic about my outcomes.
Endometriosis has stealthily stolen my health, energy, fertility, and capacity to work full-time across the span of the last 15 years. I simply haven't had the energy to cope with a full life and have had to scale back.
I am hopeful of making a full recovery from my surgery and to experience good health and more energy again. I have been sick for so many years, I am not sure how that will feel - but I sure do look forward to finding out.
To all those out there on your endometriosis journey, don't let this @#$% of a disease get the better of you, stay determined to beat it, or at least give it a bloody good fight!
Listen to your bodies and be persistent in seeking your answers- many doctors know little or nothing about the rarer complications of this disease (such as bladder and bowel endometriosis) so you do need to persistent until you find a doctor in the know. Warm regards and best wishes for your health and life journeys.
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