Michelle – Undiagnosed, symptomatic, worried.

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Hi Everyone,

I am one of the lucky ones.. well at least that if I have endometriosis at all as I am, as yet, undiagnosed.. when I say I am lucky I mean that I got my period aged 11 and had them perfectly normally like clockwork every 28 days aside from one random agonising one age 24 that had me rolling around in pain. I had horrendous cyclical mood changes though and used the pill for a few years to help. This worked well until it stopped my periods and I hated that so stopped taking it. I got pregnant easily and had baby 1 at age 26. After this sex was always painful, as were my periods. I felt like I had been kicked in my pelvic bones and couldn’t stand for long. I assumed it was normal to an extent and the doctor at the time told me to do yoga or pilates. During the 16 months between having baby number one and getting pregnant again, I had several ‘stomach bugs’ severe pain that made me pass out at times, sweating/chills and diarrhea.. only a few years later it occurred to me that none of these times was anyone else sick and it was unlikely they were stomach bugs. I never noted at the time if they were connected with my monthly cycle.  I had a blissful second pregnancy and breastfed baby 2 for 15 months.. I wish I never stopped. My period came back after 9 months with the same pelvic pain as before along with thrush at ovulation and menstruation. I also started getting ovulation pain. Otherwise, I did ok although the thrush drove me crazy. When I stopped breastfeeding I slowly started getting fatigue heartburn and diarrhoea symptoms. I thought it was from reintroducing dairy after breastfeeding an allergic child. It was similar to some of my pregnancy symptoms and was somewhat cyclical so deciding I didn’t want to get pregnant I used the Evra contraceptive patch. (I need not have worried.. sex was incredibly painful at this point). When using the patch I became so fatigued I could barely get out of bed so stopped using it after a week and immediately felt better.. the following week I got my period after a night of being up with my sick daughter. I’ll never forget sitting on the floor in the bathrooms of my daughter’s dance class with the room spinning around me. Severe nausea, pain and diarrhoea. I took Motilium and suffered through for the day. I didn’t feel right for that whole week.  8 days later I got a severe stomach bug.. ill spare you the gory details but suffice to say it was 5 weeks before I could go back to work.  I then had a flare-up every time I ovulated or got my period.. pain, severe nausea and running to the toilet.. severe fatigue. I had these symptoms all the time but they were worse with my cycle. All gastro tests are normal. All blood tests were normal. I lost almost 3 stone. That was 2 years ago. Luckily at one GP visit for one of my kids, our regular doc was away and the other doc asked me how I was. He asked if endometriosis was ever considered. I argued with my misconceptions that I got pregnant easily etc. He discussed it with my doc who asked me to ask my gastro doc and they referred me to gynae. I had never mentioned pain during sex to my new GP after being dismissed previously.  Guess I was embarrassed.

  • At this stage my symptoms were
  • Cyclical severe nausea, pain and diarrhoea
  • Everyday nausea and abdominal pain
  • Pelvic pain when standing
  • Severe pain during sex.
  • Lots of food intolerances.
  • Heartburn
The first gynae doc I saw told me as I got pregnant easily I didn’t have endometriosis. She told me I couldn’t have adhesions as I didn’t have a cesarian???. She wasn’t pleasant and told me to go away basically. The only thing she did suggest was trying the pill again which I was terrified of so we settled on the progesterone-only pill. I didn’t take it for months due to fear but when I did it changed my life. While I still have symptoms daily, the cyclical flares stopped and I could put on weight again. I still have flares especially when I do too much but not as bad. I also stopped getting thrush after 2 yrs of constant thrush and meds for it.
Next gynae I saw said yes I could have endo but treatment would be the same as what I’m doing so no point investigating. The third one I saw in January this year said the same. I bawled crying at how much it is affecting my life.. days off work, no sex, unable to look after my kids the way I want. I told her I’m seeing gastroenterology, immunology, dietician,  physio and was referred to endocrinology and I  want to rule out things so I know what tree I should bark up. I feel in limbo with no diagnosis…She went and spoke to the consultant who I haven’t met…and they agreed a laparoscopy to diagnose might be good. She told me it would be in 6 months. I rang after 6 months and I was told it would be at least another year. However, I’m glad. It gave me time to do research and learn as much as I could through the fab girls in Endometriosis Association of Ireland and I’m now planning to go to England for a diagnosis or for it to be properly ruled out.  I’m terrified of spending loads of money and then not having a diagnosis and that’s currently what’s preventing me, along with saving money. I don’t have health insurance.
  • I have had 2 pelvic ultrasounds including a transvaginal one
  • Upper abdominal ultrasound
  • Endoscopy and colonoscopy
  • Several stool tests for inflammation, bugs and h pylori
  • Breath test for sibo
  • God knows how many blood tests
  • A 24 hour urine test
  • A sst test. (as one of my blood results showed low cortisol)
My current working diagnosis is irritable bowel syndrome. I got to the stage I could only eat 6 foods without extra symptoms and I’m slowly expanding this now. I think have about 14 foods now. Right now I’m coping ok. I am slowly introducing foods and my anxiety about getting so sick again is decreasing. After everything that happened, I developed a fear of catching a stomach bug for fear that would set me back. I couldn’t afford more than the 54 days I had already taken off work in a year. I tried the following:
  • Fodmap diet.. initially got worse as I was eating more veg which seemed to be a problem for me
  • Salicylate diet.-huge improvement.. still low fodmap though. Very restrictive diet
  • Eliminating food intolerances worked brilliantly.
  • Taking vitamin d.. great
  • Probiotics.. helped a little initially.. wore off
  • Getting rid of thrush helped
  • Acupuncture did something.. every session gave me a horrendous flare up for hours and after 8 sessions I couldn’t take it anymore.. it must have been doing something though.
  • Osteopathy.. brilliant for me… wish I could keep going but too expensive
  • Dietician (very experienced one) great help
  • Combatting my anxiety helped loads.
  • Getting lots of sleep helps.. if one of the kids wakes me in the night I’m guaranteed a flare.
  • Doing too much kills me.
  • Educating myself on my potential diagnosis kept me sane and the endometriosis association has been great for this. You need to be careful to use proper evidence-based information.. at one stage I was so sick I thought that there was so many conspiracy theories going on to make me sick.
I still have no idea if I have endometriosis. My symptoms aren’t the most typical out there. I hope ill find out in the next yr when I get to England. I have had 2 yrs where I barely lived with fatigue and nausea and pain. Thankfully my life is back on track now but with daily symptoms.
If I was at the start of my journey now I would hope I would be able to advocate for myself better and not listen to doctors with attitudes. I also wish I never restricted my diet so much as its really hard to reintroduce foods again. Although I fully believe diet has a part to play in all illness, I went too far. I haven’t had fruit or veg in over 2 years. Be careful with diet and seek help from people who are trained if you can.
Michelle

1 Comment. Leave new

  • Thanks for sharing your story- I’m being investigated for infertility and I certainly can relate to some of the symptoms you describe, though not as severe. Also, not sure if this is a help or not but have you ever considered the possibility of Addisons Disease- some of your symptoms and low cortisol are consistent. Best wishes with finding a diagnosis and successful treatment x

    Reply

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