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.
Symptoms:
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.
Claire xx
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Great post Claire. Like you, I had a lot of a typical symptoms & just knew something wasn’t right. Despite countless visits to my “helpful” GP to say I thought something was really wrong, I was eventually written off & packed off to self help groups for depression as that was his diagnosis...it was all in my head & I was imagining the chronic pain & fatigue and must be depressed.
Over 15 years later after battling chronic fatigue my search for answers & a less stressful life took me to Australia, where, within a year, they’d diagnosed severe endometriosis, I came round from my lap being told I was riddled with over 20 years build up of Endo and was weeks away from losing a kidney due to adhesions shutting it off. My ‘helpful’ GP in the UK put my lower back/kidney based pain down to me sitting in my chair wrong and for too long each day...give me strength.
I too had the itchy skin, the low blood sugar, low blood pressure, palpitations, sinus issues etc. GP was bemused by histamine... first thing I found online searching about histamine.... it’s closely linked with oestrogen, my skin was at its itchiest around ovulation...ie when oestrogen is at its highest level...so why can I join the dots so easily yet no doctor ever could??!!! Palpitations and night sweats also caused by hormonal fluctuations & sinus issues linked to overall inflammation.
Our stories are great lessons in trusting your gut. You know what isn’t normal for you. You know when something is wrong. The hardest bit...getting the medical ‘experts’ to believe you.
I really hope surgery will help but please keep an eye on things. I’ve had v aggressive Endo which has come back within months of most surgeries. I eventually had a 9hr surgery and total peritoneal excision which certainly helped more but 2 years later the old issues still come back to haunt me. I’ve not gone on any pill as im still trying to conceive so that hasn’t helped keep the Endo at bay. So please keep being vigilant and I don’t need to say to you trust your gut instinct as you’ve got it! Well done. The biggest thing I’ve learnt with this condition is that you’re responsible for looking after yourself. I searched worldwide for the best surgeons and everything I’ve done to see improvement in my health has been solely down to my hard work, research and desire to never give up. Not once has any GP ever done a thing to help & it is a national outcry when so many wonderful ladies suffer that they are still let down for so many years.
I'm glad I stuck to my guns. This can be such a debilitating condition and your story highlights that when left undiagnosed the consequences are tremendous. I wish you well with trying for a baby. I'm 31 now and am yet to try.. so i dont know if i will experience problems but this is something now on my mind. Thank you for reaching out, keep us updated and stay strong Xx
Yes, absolutely, I’m afraid it does start to feel the responsibility for our health tests at our own door sadly. I was weeks away from my kidney dying and all the toxins were getting pumped back into my body - hence the permanently drugged feeling like I was losing consciousness. I thought about pursuing my old GP legally but you know what, your efforts are best served fighting on and doing the best for yourself, resenting doctors for misdiagnosing is so understandable but just leaves you full of regret and bitterness which only does you further harm as they couldn’t care less. I’ve tried to conceive since I was 37 having not met the right man til late, I’m now 44 & have been having donor treatment. I don’t know your particular circumstances but if you want children in the future I’d go for it ASAP. If I’d known what I know now I would have tried in my twenties even if other things maybe weren’t quite right - as long as I was with who I wanted to be with them nothing else would have stopped me to be honest. I don’t want to sway your decision but my biggest regret is trying late for a baby only to find I had such a debilitating condition which ultimately had a massive impact on my fertility. All my friends have had babies between their 38-42nd birthdays so I knew it wasn’t just a case of leaving it late for me, the Endo has an enormous impact. So much so, 5 rounds of IVF even starting at 38 proved useless. I know it’s a v tough decision to take but if I were to be able to live my time again I would have tried much earlier as I was desperate for children and haven’t been able to. I’m still doing treatment but unfortunately had a miscarriage recently so am up against it, especially time wise now given that I don’t want to be ancient with a young child!
All the very best, I wish u all the luck in the world. Xx
I used to get v itchy arms, tummy and lower back especially. Funnily enough I developed a patch of eczema right where the worst bit of my Endo was near my kidney. Strange how the eczema just marked the exact spot where a deep infiltrating nodule of Endo was. Do anti-histamines give you any relief? Maybe worth a try as histamine and oestrogen levels are apparently linked. Used to get the eczema on my shins when I was younger. Good luck with getting some relief x
In regards to the itchy skin ..I'd say the anti histamines managed it but not completely and I would still be itchy after taking 3....just not as itchy haha. It's everywhere and anywhere for me but I tend to get it in one place at a time- a patch on my leg...then my arm...then the sole of my foot. The worst thing as anyone with itchy skin knows when you scratch it, it gets itchier so its an endless cycle. Thanks for replies and kind words everyone. I'll let you know if my symptoms go or reduce over next few weeks. Fingers crossed x
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