Endometriosis: 'They think I'm a drug addict' - BBC Stories

Here's the link to the report for those who are interested www.bbc.co.uk/news/health-49897873

I have bladder endometriosis. It’s probably one of the most painful things I have gone through. I’m 15 years old and I have had it since I was in the 4th grade. Doctors kept on saying that I was faking it. I have Been told by doctors that I’m only having this pain because I’m sexually active. I’m a virgin, and they don’t believe me. I have been too that it’s only a UTI or bladder infection. I have only been diagnosed this year. I have been in pain before I even started my period as a kid. I’m in the process of taking medication and it’s helping. Doctors need to start listening and trying to help more.

Everything said in this is so true. I have suffered from it since I was 13 and doctors only started looking into it when I joined the military at 21. I live in the U.S. btw.

THANK YOU FOR THIS. 100% my experience. Powerful and empowering, validating. THIS NEEDS TO BE HEARD. 1 in 10 and society isn’t ready for us, to acknowledge us, but this gives me hope this is changing. At least in the UK. Too late for so many women but so NEEDED.

I'm from the US & have experienced the same. For years I was told my pain and extreme bloating were normal for every girl. Then I miscarried, then nearly died in two subsequent childbirths. I waa told my back pain wasn't real, it was "just stress" from having so many kids or "probably just IBS." No answers as to why delivery nearly killed me. Twice. I finally got to a doctor who, after years of ckecking out different things through labs, ultrasounds and surgeries determined I had adenomyosis, endometriosis, PCOS, and pelvic adhesive disease. It was a long journey. I had a partial hysterectomy at age 30 but still have daily pain. I am currently looking into excision with a specialist. I encourage everyone to visit Nancy's Nook on Facebook. She educates physicians and patients about endo & provides people worldwide with a list of qualified surgeons.

I was diagnosed at 16 and honestly it breaks my heart that it could take 7/8 years for others to get a diagnosis

I was diagnosed in 2014 after I had a 24in tumor rupture on my ovary. Both tumor and ovary were removed and my Endo actually hurt much worse after. I've had Lupron injections that helped with pain, but ruined my short term memory and I now have hot flashes as a result of the early onset menopause. Im only 28 and spend most of my time in bed with pain. I try to spread Endo awareness to anyone I can.

This illness has ruined my life. Unemployed for 3 years and hoping to be a candidate for second surgery. First surgery ablation was used! Which is ineffective. Excision is the best way to go! Please if you get a laproscopy make sure they also use excision techniques instead of ablation. The lesions literally need to be cut out! Not burnt out. I want my life back! There is no quality of life with this horrendous monster. More drs need to educate themselves on this very important topic! Women are suffering, have nowhere to turn, and are being gaslit! It’s time for a change.

I passed trough 14 doctors until the one that pointed endometriosis, I started to feel the badass pain when I turned 15, literally one day after my birthday I had this non stop pain in my back and non of the pain killers were helping, this was just the start between drugs, injections, doctors, medical exams, some doctors just kept asking ME why I was feeling that, as a teenager it was AWFUL some days I just wanted to feel the pain and be quiet. Endometriosis needs to be known more.

These doctors really do not believe how extreme this pain can be. I have Severe stage 4 endometriosis, endometriomas, bowel endometriosis. It effects my life, extreme pain, consistent pain (ovulation, period, random, doesn't matter) extreme fatigue, dizziness, nausea. Endometrioma bursting has caused me to vomit, sweat, passout several times and lay in extreme pain all night. I struggle with self love and knowing when I need to go to the Hospital so I often put it off until I can no longer. It makes me sad and upset when I have to go to the Hospital because I'm so unsure and I don't know how to describe what I'm going through, so I'm not being taken seriously and I cannot stand the medical gaslighting going on. Too many times people are being manipulative, rude and hard to talk with when I can read the energy of people who truly Don't get it and don't believe it. I could care less if they believe me or not at this point but more so worried about all these young girls who are going to go through the same scenarios and there is still no cure. It's mind boggling. I pray for things to change for the better.

10 years to diagnose me and even was left alone when i refused keyhole surgery out of fear. it’s been a year and i just feel so sad. i’m addicted to naproxen now and even i still suffer

I'm in this RIGHT NOW. Crying my eyes out and told the same thing. IBS, pcos, I cannot take the constant constant pain. I do not want pain pills, I want them to remove it! I made a video for the next Dr. That wants to turn me away

Have been recently diagnosed with this condition has taken me 3 years to get though to any doctor ! Possibly had symptoms from earlier years but I just thought it’s normal you have to do with it . Started to feel like I was going insane due to being told it’s not anything also once was told “it’s just pain you’ve got to deal with it” . Have had surgery and they done what they can do but am happy that I know that it’s not all in my head !

When I seen this it made me so angry 😡 yes it’s great that it’s now getting the attention that’s needed but this is long overdue and should have been done many years ago. I have suffered with this debilitating condition since I was 11years old, I have begged doctors to find out what is wrong and I was ignored and brushed off, I am now 35years old and was only diagnosed early this year when things got so bad I ended up spending months in hospital and was left partly paralysed from complications of this condition, I know rely on careers and my family for just simple tasks, because I was left for so long, the damage has been done, my only way to have children would be IVF which they turned me down for because my husband had a child years before I even meet him. My heart is broken, being a mum is all I have ever wanted but this has been taken away from me. You would think after the years of hell the health service has put us through, they would at least do the descent thing and try to help with the fertility side of things

12 years and still no further into trying to get a diagnosis..... ive been bleeding for over a year. Ive gone through 4 different contraception pills and have the coil and I am still bleeding . I take more than 20 pills a day, including celecoxib and tramadol whilst also having oramorph .I'm so tired

I get very similar judgements and I’ve never dabbled in hard drugs. Just an average pothead trying to maintain a peaceful life. I also hate my periods they are so irregular dark and scary coloured, I have to take estrogen just to stay regular. And it barely helps. Also even though I had the loop procedure done where they cut of a portion of your cervix. There was still no clear evidence of cancer only the benign cells. Which is scary when your a parent and need to be there for your children because no one else is.

Absolutely true!!!!

This video was uploadd in 2019. I'm sad to say that I don't believe much has changed/improved for those of us suffering with this condition since then. There's been more talk and raising awareness which is great, but less concrete, tangible positive outcomes from a medical perspective for women.

Over 20 years to get diagnosed.. this will be my 3rd surgery, my 1st since the hysterectomy. Hysterectomy does NOT treat or cure endometriosis. Birth control does not stop it from growing either. Excision surgery is the gold standard.

응원해요!!