My diagnosis story: Endometriosis awareness month.πŸ’›πŸ’›

After years of fighting to be heard, years of painful and excruciating periods being normalised, my regular pelvic pain being normalised, just being given contraception and sent away… in July 2019 my life changed forever.

I was finally taken seriously by the 4th gynecologist I’ve ever seen and I was booked in for a laparoscopy which is the only way to diagnose endometriosis.

In July 2019 I had my laparoscopy and my initial thoughts had been confirmed, after fighting to be heard, after my pain being normalised for so long even with my mum having endometriosis (having a hysterectomy at age 36) and the medical professionals knowing this.

I was finally diagnosed with Endometriosis at aged 26.

I was relieved because I finally knew what was wrong and naively thought I would be treated properly now BUT I was more upset and scared because I knew this condition would definitely impact my future.

During my laparoscopy 4 patches of endometrial tissue was burnt off in my uterus and I was told there was too much endometrial tissue elsewhere for them to deal with- it is in my bowel, bladder and dotted throughout my abdomen surrounding my organs and I was told I would have to see a bowel specialist to burn the rest off by excision.

It took me a long time to recover from the laparoscopy especially because in the eyes of my employer at the time it wasn’t a serious operation and I was forced into work too soon after my operation picking up heavy boxes…initially they wanted me to come back 2 days after my operation asking if I could simply take painkillers and come in- baring in mind I was already dosed up on pain killers, struggling to move and still had all my stitches in.

Where I worked at the time was a very male dominated industry and trying to make them understand the amount of pain I was in was virtually impossible- I recieved no support or even compassion either from the majority of the employers and colleagues.

After months of anxiety, worrying what the next steps would be, how bad my Endometriosis is and many more questions that were buzzing around in my head I had my first gynecologist appointment after my laparoscopy.

After being told I would be referred to a bowel specialist and that they would try and burn the majority of the endometrial tissue in my abdomen off off I was angry, confused and disappointed that I was sat with another gynaecologist, NOT a bowel specialist and the only treatment they would offer me was the combined contraceptive pill which I knew wouldn’t work since I have been on numerous contraception methods including pills since aged 15 and none agreed with me.

I was told to take the combined pill for 3-months then have a period, however at the start of the second strip (which is the second month) I started bleeding and remains bleeding for 1-month and 1 week, my abdominal pain had got considerably worse resulting in me struggling to even get on with my day-to-day life and my acne was the worst that I have seen in a long while.

My next gynecologist appointment wasn’t until April and I didn’t know whether to stop taking the pill or to carry on taking it. I first approached my doctor’s but they refused the deal with me as it was the gynecologist who give me the contraceptive pill. I then phoned the gynecologist department at the hospital that I had visited asking to speak to the gynecologist I had seen last time, but I was told to leave a message and I would get a call back, however one week passed and I received no call back.

Angrily I called again and I was told the same story and t two weeks had now passed and I still heard nothing so I rang once again, but this time was told by the receptionist that’s the gynecologist department don’t do callbacks- obviously I was pretty annoyed I firmly but politely explained why was calling due to my bleeding and pain and the receptionist asked why I couldn’t simply wait until my next appointment of which I swiftly replied “no chance am I suffering until April” and eventually I was given an emergency appointment the following week.

I was annoyed but hopeful that this next gynaecology appointment would be a good one and help me get better but again I was left disappointed.

I was sat opposite a gynaecologist who was clearly seeing my notes for the first time and who openly admitted she wasn’t a endometriosis specialist.

She firstly made me feel like I was purposely being awkward for not wanting to try anymore contraceptives and then spent considerable time looking through my laparoscopy photos and an endometriosis treatment medical book looking somewhat confused and then brashly asked me whether I want a children, of which I didn’t answer and then she recommended the strap injections.

I was handed a leaflet and asked if I wanted to try it with only been told that it would put my body through an early menopause which may give my body a chance to recover from the endometriosis and temporary stop it from growing for 6 months BUT it can give me menopausal symptoms and if it does I may have to go through hormonal therapy.

Now I’ve seen my mum go through menopause for years and by no means did I want to put my body through that for no guarantee that it would make me better, so I took the information and told them I would think about it but I left that office feeling very confused and upset.

None of my questions were answered- why they didn’t refer me to a bowel specialist as promised, what stage of endometriosis I have and what might my chances be in the future of having children as I have both endometriosis and PCOS and this is what upset me most, I do not like feeling clueless when it comes to a condition that is having a significant impact on my life and will continue to do so.

I really didn’t know what to do, I spent the next week or so feeling so depressed and conflicted and it really had an impact on my mental health and my self-esteem.

Only after confiding in a total endo warrior on my social media (Instagram) did I found out that these were not my only options. I found out I could request the seeing endometriosis specialist through the NHS and it is my legal right to do this and they cannot say no.

Straight after this I was on the phone to my doctor’s to get the ball rolling and now I am anxiously waiting to hear back from them.

Can you imagine what it’s like to be ignored for so long and to remain in pain without a diagnosis or treatment.

Did you know: 200 million women worldwide suffer from Endometriosis (that’s only diagnosed cases) and that Endometriosis falls into the top 20 most painful conditions right near broke bones, heart attacks and appendicitis.

Can you imagine what it’s like fight and pain everyday and living on strong painkillers just to cope; imagine going to the doctors for any of these conditions mentioned above (heart attack, appendicitis, etc) and being treated like a drug seeker because no other painkillers work and you’re being told that your pain is all in your head or that it’s just the bad period time and time again.

There is nothing more thought-provoking, beautiful and inspiring then fellow endo warriors around the world coming together this March for a common cause- hopefully during this endometriosis awareness month more people will recognise this condition, more endometriosis sufferers will connect with each other and get the support they need and advice, and governments and organisations worldwide will be think their approaches when it comes to dealing with this condition but most importantly diagnosis time should be drastically reduced and severe pelvic pain and period pain to stop being normalised.

Please support your local endo sisters, read about this condition if anyone close to you has it, be compassionate and understanding to anyone who suffers a chronic pain condition, don’t judge, and share Endometriosis stories to raise awareness this month- only by doing this will we be listened to and it’s already happening…. πŸ‘‡πŸ‘‡πŸ‘‡

This is a news story published today which is brilliant news for endo warriors; read about it on the BBC news website or app.
You can also check out the Endometriosis UK website for any current news on Endometriosis, educational material and support.

Thank you for reading my story, feel free to share!

#endometriosisawarenessmonth

#endowarrior

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