Hello. I wanted to post about my experience getting diagnosed as I did not have any of the typical symptoms of endometriosis and its taken me 10 years to get an answer- I was 31 the day before my diagnosis 2 days ago.
Please note I was prescribed a contraceptive pill called Loestrin 30 when I was 14 to cope with heavy painful periods. I took this pill for 15 years until I was 29.
Chronic itchy skin- I have been taking 3 anti histamines a day for the last 10 years, I visited a skin specialist 5 years ago who confirmed my skin "produces too much histamine" but no explanation why. I was told to just keep taking anti histamines.
Night sweats- I have drenching night sweats at various times during cycle. I can go a month or two without one then have 2 weeks of sweating every night.
Period stopping- Even though the most typical symptom of endo is heavy bleeding I was tested for early menopause aged 29 due to having had no period for 2 years.
Nausea/ low blood sugar- unpredictable and sudden.
Chest pain, heart pulpitations and shallow breathing- again unpredictable and sudden.
Bowel problems- soft stools or constipation regularly.
Inability to regulate body temperature- either very cold or very hot.
Significantly I had NO PELVIC PAIN, NO BACK PAIN and NO BLEEDING.
No one ever took my symptoms seriously although they cause(d) me significant daily discomfort and I had started to consider they could be connected. The GP's did take an interest when my period stopped. I had many blood tests, ultrasounds, internals and chest scans. It was found I have low oestrogen which is not typical for endo. I also kept being told I have high cholesterol which I still find odd- I'm 5'1 and around 7.5stone and eat a balanced diet. Nothing else was found. I felt like they were telling me it was in my head.
The GP asked me to come of the contraceptive pill Loestrin 30 aged 29 having ruled out early menopause. Within 3 months of stopping the pill I was bleeding and experiencing agonising cramps alongside all the other symptoms I had had previously. This is when endometriosis was first mentioned.
I really had to push to see gyne and when I eventually saw him he said- "do you want surgery or not?" it was a difficult decision to make to have the op. My biggest fear was not getting diagnosed and feeling foolish having put myself through it. I was so used to hearing "have you tried taking a multi vitamin?" "is it something you'e eaten?" or "Is your duvet too thick?" when I discussed my symptoms with friends and family. I think this is the hardest part of endo. I FELT EMOTIONALLY ALONE AND UNBELIEVED, A MOANER. I was emotionally reassured and relieved that immediately after I came around from my op the surgeon was at my bedside confirming that I do have endo. I'M NOT MAD! I think my actual words were "I f*****g knew it!"
I have been advised by my gyne the pill Loestrin 30 is not used to treat endo. I will discuss this with him at my 6 week follow up because I feel it is significant that I HAD NO PAIN for 15 years when on this pill and also this pill seems to have suppessed any bleeding.
I do now have my diagnosis. My op went well and luckily it was only around my pelvis. I want to say thank you to endometriosisUK for shedding some light on what I was to expect as I was given very little from NHS. I guess this is the start of my journey with endo....I'm looking forward to seeing if my symptoms reduce now I have had surgery as well as getting involved in raising awareness about this illness. If anyone is having a-typical symptoms my advice is simple- trust yourself. I knew something was not right so I kept pushing. If it doesn't seem or feel right keep going back and don't be put off by people who are not experiencing the symptoms, you know your own body and they don't.