Search endometriosis experiences

I was recently diagnosed with endometriosis after approx. 15 years of horrific period pain. For years I have spoken to different GPs about my pain but they just suggested changing contraception or prescribing different pain killers. My mother is a GP and both of us thought I had endometriosis for years before receiving a proper diagnosis. Even with her guidance and advice it took me about 15 years to get diagnosed. I was referred to different gynaecologists over the years, poked and prodded with no empathy or explanation for my pain. It eventually took Dr Simon Vaughan Jones (not sure if I’m allowed to name them here but he truly was amazing!) at the London Independent Hospital (on the NHS, darling) to arrange an MRI scan, which confirmed that I had endo. I now take the progesterone only pill back to back, which has stopped my periods, so I am pain free. But this doesn’t work for everyone and it isn’t a solution. My main concern is whether it will affect my fertility and ability to have children, but I’ve been told I won’t know that until I actually start trying to have children. So fingers crossed…

My pain, sharp like a thin knife in my vagina poking me so hard I was doubled up in pain. My GP said it would probably sort itself out once I had children. Years went by, I struggled on. I was in so much pain, my mum who had private health insurance through her job got me an appointment in Harley St. He diagnosed endometriosis and surgery happened a week later. Keyhole Laser surgery. Found it on my cervix and ovaries. Plus I had an injection which stopped my periods for 6-8 months. It allowed my body to recover. It also gave me a premature menopause, which was fun. Not. However my endometriosis was gone. Get help, we shouldn’t have to live with this !

Started periods at 11 in primary school and thought I was dying. I'd never felt pain like it or seen so much blood. 90% of my visits to the doctors have been about period pain affecting my day to day life. Since I was 15, I was put on the pill for pain management and I honestly can't recall if it helped as I've been on it all my adult life until coming off age 29. I'd cry after most conversations with the GP (I know they don't have much time so not GP bashing!) as I'd be asked the same questions like "are you using the pill for anything other than contraception?" YES! And was told different things about taking the pill back to back - that it's fine to do so and I don't need a break, that I MUST have a break every 3 months, or that I should always have a 7 day break. Since read up on The Lowdown's blog and know I was safe taking the combined pill back to back. I've been to the GP in tears on Christmas eve after laying crying on the bathroom floor in pain and was offered Mefanmic acid which didn't work for me. I've only had one GP say it sounds like endometriosis and they'd treat it with the pill anyway, so back to square 1 for me! "here, have another pill!" I've since come off the pill and feel better in my moods and can't say my periods feel any worse. It was nice not to have a bleed each month but I still had cramping and felt so bloated. So I feel like I've exchanged low mood for period pain. I don't know which is worse. How do you know when period pain is more than "just period pain"?

I started my period aged 14 and I started getting the worst period pains when I was 18. I had to be put on a contraceptive pill and given mefenamic acid and codeine to deal with the pain. Before I was put on this I use to be throwing up with the amount of pain. I only really get the bad baddddd pain on the first couple of days of my period and maybe a day before. I have had multiple ultrasounds and nothing has been seen so am now waiting for a laparoscopy.

Awful period pain

I started having extremely painful periods at the age of 15. I had to be sent home from school every month, I was sick and didnt eat for a few days. I was given mefenamic acid and co-codamol but these did not help. 17 I started the contraceptive pill rivegidon. The period pain never got any better or went away. Then in October 2020 I had a laparoscopy and was diagnosed with endometriosis. The pain never stopped and I am now on my first injection of Zoladex and will need another laparoscopy soon. I find it extremely difficult to communicate with my friends and family and tell them how much it's affecting me. The fatigue is the worst symptom and it has stopped me from doing everyday tasks. I feel anxious about whether I will be able to have children or not. Even thought I am nowhere near ready at the moment.

Symptoms started shortly after I got my period, I had really heavy periods and lots of cramping. Symptoms were somewhat mitigated by oral BC for a few years, but I ended up having significant pelvic pain everyday, and I would get ovarian cysts that ruptured monthly which was awful. I had doctors suspect endo early, and they treated symptoms with birth control and then Norithendrone Acetate. I eventually got diagnosed via surgery with a pediatric gynecology surgeon. This was incredible validating, and hugely reduced my day to day pain.

Had excruciating period pain for as long as I can remember. At 26, I had daily pelvic pain that affected my day to day life. Opted for private laparoscopy that diagnosed and ablated the endometriosis. After 3 months symptoms were worse. Opted for endometriosis specialist surgery where they excised the endometriosis. Symptoms greatly improved. No more mid cycle bleeding, some shoulder tip pain, periods still painful and heavy but manageable.

I had symptoms from my very first period at the age of 13. My bleeding was so heavy that I used to have to set an alarm for every hour to get up through the night to change and clean up otherwise I would just soak through everything. The pain I experienced was so bad that I used to pass out and ended up in hospital many times. Doctors never investigated and kept saying its life as a woman and I need to get on with it, period pain is normal. I used to tell them it was like no pain I'd ever experienced but they constantly dismissed it. The pain during my period is still the worst pain I've ever felt. I could never go to the toilet without experiencing severe pain whether on my period or not, the toilet bowl used to be full of my blood, my periods were lasting 2 weeks as a minimum and the amount of blood I used to lose was scary. I'd get diarrhoea and vomiting as well. I was back and to with my GP. I'd been on different pills and every pain killer going but nothing touched it. I was on iron tablets for anaemia. My GP told me it was impossible that I was still in pain. I had tried every pain killer possible and nothing even took the edge off. I'd taken things for cycle control that just made me more ill. You name it, I'd tried everything and more. That should have been a red flag but they just continued to say it was impossible and I couldn't be in pain. I think they believed I was making it up. At the age of 19, I collapsed and was rushed to hospital. The pain was so bad I physically couldn't move. Once again, I was discharged with no investigation and told to follow up with my GP. I went to a different GP this time and she immediately said she suspected endometriosis. She was mortified at how I'd been treated the last 6 years and how no one had taken me seriously. I had ultrasound scans which showed nothing but I was also booked in for my laparoscopy straight away and of course, endometriosis was found between my womb and bladder. To anyone awaiting a laparoscooy, mine went great. I had minimal pain afterwards, it was more discomfort and I felt a bit off from the anaesthetic but it was all very minor. It was worth it as this is the only way to definitively diagnose endometriosis. This then started the experiment of finding a treatment that worked. After a few more years, I tried the injection. This has been the only thing that has helped me. I can't say I'm pain free but I don't have periods, just occasional spotting. The pain I do experience isn't often and is what I would imagine normal period pain to be like. I can go about my life finally. Its been 10 years since I was diagnosed and 16 years of living with endometriosis and it still seems it isn't taken seriously enough and too many women are dismissed as it being just "periods". The more awareness of endometriosis is out there, the better. Hopefully future women won't have to wait years for a diagnosis.

I have been experiencing extremely painful periods since I was around 14, I am now 25. I didn’t experience severe pain every month (approximately 3-4 times a year) but in some ways this made it more challenging to control as I never knew if I would need to take time off school/college/work. At age 18 I started on the combined pill after approaching a GP about my symptoms for the first time. At age 20 I swapped to the Mirena coil as my BP was elevated and I was experiencing migraines on my week off the pill. Symptoms were very well controlled for a year or two then started experiencing pelvic pain (period like cramps) 2-3 times a week. Was referred to gynaecology by my GP but it had resolved by the time I got my appointment. Approximately 2 years ago I started getting semi-regular periods again with cramps up to a week prior to bleeding. I went back to my GP and was re-referred to gynaecology. Had a pelvic exam, pelvic ultrasound, Mirena replaced with no improvement. Was referred for surgery 11 months ago with no word of when I’ll be seen. Pain is steadily becoming worse with me now being unable to stand/walk for 2-3 hours while the pain is at its peak.