Hi everyone,
I am currently writing a book for one of my last university assignments about endometriosis, and wanted to get some real stories from women that have been turned away from doctors. I am currently writing a part on hysteria and wondered if anyone has any direct quotes of things that doctors have written off their pain as, whether that be anxiety, phantom pain or unrelated conditions?
Thanks x
I’ve personally had UTI, ovulation pain and IBS.
I was told that the muscular pain in my groin was because I'm an amputee and overwork muscles...4 months later of same pain, we know it's 2 endometriomas again 🫠
I’ve had sever pain , heavy bleeding and migraines causing me to blank out since I was 13 I was told it was normal and I’d get used to it. The response I was given was take some painkillers for the headaches and put on the pill. Wasn’t until I was 30 my employer told me about Endo and I looked into it did I think omg this is 100 me ! Got diagnosed 2 months later !
Hi!! Which degree are you currently doing ?
I got undergraduate degree in sociology and masters in social and public policy. I always wanted to do something endo related but could not find a suitable assignment to fit it in. I love to recommend a research paper on the history of endometriosis it's quite comprehensive but might be a useful resource here is the doi (doi.org/10.1016/j.fertnster... if it does not work please let me know.
Best of luck!! X
I had to battle for 12 years for a diagnosis, I heard most of the usual “it’s ibs” etc, but my worst one was probably when a doctor told me “it’s anxiety and it’s all in your head, that’s causing the pain” and proceeded to write in my notes that I was “hysterical”. I complained and had that removed from my medical file but it still sticks with me.
Good luck! X
I was told it was probably IBS and my worry about it was anxiety and I may even have depression! and was offered anti depressants. Said the pain was too high up to be coming from my abdomen/womb area. Most likely bowel. So possibly IBS.
Only when I went through fertility investigations privately I was told about endometriosis.
I went back to NHS and was told the best they could offer was hysterectomy. But said the endo gets better if I get pregnant. (If only getting pregnant was easy!!)
Good luck on your assignment!
I was told it was part of being a girl (I was early 30s) when I said will I have to put up this for the next 20 years this bad until the menopause, will it get worse - at this point I was panicking how I would function. I was told to stop being so silly.
6 years later they removed 24 cm mass from me and I am now in surgical menopause.
One (female) gynacologist after an 8 minute conversation told me that my symptoms were just IBS.. and i should eat more bananas before my period. Then following that.. my mental symptoms worsened and I had a breakdown. This was misdiagnosed during the pandemic as bipolar disorder and i was prescribed benzodiazepines and anti epileptics without me ever seeing a psychiatrist. (Since corrected, im very obviously not bipolar). I only got diagnosed with stage 4 endo and adenomyosis following 4 failed ivf cycles... during a mapping scan for 'a quick laparoscopy to tidy things up'. These were all private doctors.
In my mid 30s, after 5 years of back and forth to the docs about my horrendous periods, one GP told me my extremely painful and heavy periods were to be expected as I was in my 30s and hadn’t had any babies! I ended up going to a private gynae consultant a year later and within 4 months had my first lap and was diagnosed with endo. 10 years and 2 further laps later, I am now booked for total hysterectomy, hoping beyond hope that this will give me some form of life back.
Good luck with the book writing, I’m sure there are endless stories from Endo ladies,💛
My favourite quote from a GP during a telephone appointment is "Let's not go looking for things that aren't there". I'll never forget that.
I had a referral to a gynaecologist after an ultrasound found cysts and a blood test showed raised CA125. I also had stomach pain. Once she’d ruled out cancer she basically dismissed me and I asked why I was in pain and had the raised CA125. She replied “Welcome to your 40s!” I was diagnosed 2 years later at a different hospital with severe Endo which has spread through my abdomen and to my diaphragm .
I was told in Liverpool in 1992 that there was no proof that endometriosis existed. I sat in that doctor's office crying and was told off like a child x
Hi! Good luck on your assignment. I went back and forth with numerous consultants for a number of years. I have always had heavy periods and I went through a number of periods that lasted for a few months, along with awful pain. I was first diagnosed with fibroids and told it was because I was overweight. A year before I got married a new symptom emerged, pain during sex. I was told this was because I was not lubricated enough! Not once was the possibility of endometrosis mentioned. Finally 3 months after I got married I woke up in terrible pain. Never felt anything like it. I was crippled over with it. I went to A&E and they did a number of tests. I was told it was not a gynae issue (by a gynae doctor!), then more tests and suddenly it was a gynae issue! After a trans vaginal scan in which they saw 'a large mass' (as they called it) on one of my ovaries. I was told it may be cancer and that they needed to operate as soon as possible. I was also told that I may lose the ovary. I spent a terrifying night in hospital thinking that I could have had cancer. Finally, after the laparoscopy I was diagnosed with advance endometrosis. Then promptly abandoned with that information. I was told the symtoms would abate with pregnancy and that I should not have an issue getting pregnant naturally. Well 7 years later I beg to differ! I feel abandoned by the NHS and have been forced to seek treatment privately.
Over the years I have gone back to the doctor with my pain. I couldn't really tell what was going on ( I didn't know much about Endo) as it's always been all over the lower half of my abdomen and my bowel did feel involved so when my female doctor said
"Oh it's just IBS, I have it and gave up gluten and it went away you should give up gluten"
And nothing else was said, suggested or done (tests or food exclusion) in regards to my 'IBS' or pain. I felt a little disregarded.
Later when the pain became more intense I went back saw another female doctor who was specifically for sexual and reproductive health I described the pain and she kept going
"Could you be pregnant? Are you sure your not pregnant? Let's to a pregnancy test to be sure."
I had told her it had been more than 3 months so I really didn't think it was possible as I had been bleeding as usual. So we did a pregnancy test and I wasn't pregnant so she said
"it's probably just ovarian cysts but don't worry they aren't cancerous" and she sent me one my way.
I looked it up online because I felt like things weren't going right and realized she needed to do a physical exam of me and send me for ultrasound if she suspected ovarian cysts.
So I went straight back saw a different female doctor and she was surprised when I explained what happened she did the exam and sent me for an ultra sound saying that a thorough transvaginal ultra sound would be best.
Waiting to get this ultra sound done during the pandemic so it took a little while but when I finally got to my appointment it was just a usual ultrasound they said they had a clear enough image and as it wasn't demanded in my notes they wouldn't be doing a transvaginal even if the doctor had told me that they hadn't written it down for the nurses. I was really annoyed.
Anyway nothing came up on the ultrasound so I made a new appointment to be seen to deal with the pain and finally my doctor ( who had given me the IBS diagnosis a year or so earlier) said something along the lines of " you have been going through this pain a while let's send you over to gynecology"
That was maybe two years ago. They did the surgery to find out I have Endo and I had agreed with them if they found it I would have the coil so it was all done at the same time. It was a small amount possibly due to being on contraception since 16 I'm not sure.
Safe to say my journey with this is not over. I still have alot of issues and what was a help to begin with seems to be less effective now just waiting to go back to gyno.
I'm hoping to educate myself a bit more so I can have a fighting chance at this appointment to find anything to help.
Also to note the pain was too much somewhere in this journey before gyno was on the horizon. I had various pain management prescriptions over the phone.
ONE doctor said "oh it's sounds like you have endometriosis." HE was very sympathetic and gave me a prescription for some pain medication. One man out of all the doctors I had seen (who were mostly female) since 15 about my pain actually guessed right.
I have found the sex of the doctor makes no difference. However I do feel for the doctors somewhat. At my surgery they are heavily burnt out due to the ridiculous number of patients and over the pandemic it just got worse.
Hi, took 10 years to get diagnosed. GPs kept fobbing me off, one suggested "some women just have bad periods, it's normal", another suggested it was all because I'm overweight. Even when I finally got referred to gynae, the consultant was trying to dismiss me. Constantly felt gaslight by medical professionals. It's only when I became angry and very assertive that tests were performed and surprise surprise I have stage 4 endo. I am now 4 weeks post endo surgery. So many women are gaslight and fobbed off by medical professionals it is so sad and frustrating!
Hi, this sounds like a really interesting topic to do an assignment on! I'm in the process of being diagnosed with endo. Last year I had a suspected burst ovarian cyst - I have never felt pain as bad as that. I couldn't move. I phoned the GP and he told me "it's probably just mid-cycle pain." lmao. Laughable really. I went to see an out-of-hours GP a few days later as I was still severely bloated and he agreed it was probably an ovarian cyst that had burst
Bad periods, IBS, spasming of the bowel/bladder, as well as 'in my head', anxiety and stress. I'm over 3 years into my journey. Diagnosed with adeno finally recently via MRI but high probability I have endo also. Surgery next month with a Specialist to confirm.
The 'could something be making you be stressed?' one really took the biscuit. I'm in extreme pain everyday! Yes I'm bloody stressed!
i think ‘its just period pain’ covers it
"Are you sure you're not just imagining your pain is worse than it is by worrying?" and "Women get pain" - this is what a female GP told me when I tried to get help for pelvic pain that was ruining 3 weeks out of every month. I ended up paying for private surgery - endometriosis found & excised by laparoscopy last year. Do they realise how much additional stress they cause patients by saying these things 
’it is normal for periods to hurt a little’
I had suddenly started to get crippling cyclical pain that would take my breath away at 43.
‘Do you think maybe you’re having a mood swing?’
I was asking for something to help me work whilst in pain.
’Don’t you know how busy the consultants are, you’re being impatient’
From a secretary when I called to find out what was happening 6 weeks after my CT scan having had no letter, no follow up consult, no results expressed.
Endo confirmed by laparoscopy last week.
I was told it was just heavy periods and to take some paracetamol and ibuprofen and lose some weight......
Hi I was told the pain was all in my head and was referred for psycho sexual counselling, as I might be dealing with some childhood trauma. I remember feeling so distraught and ignored
Good luck x
I saw a late teen who asked will sex always be so painful ? No pelvic inflammatory disease, no previous intercourse experienced by either partner. Seen by a wonderful surgeon & advocate for women. Sadly sex is still provoking pain. Endometriosis it’s a cruel disease intimacy aught to be a basic right. Wicked as it is not all symptoms are curable. I wish you well in your research.
IBS or bowel Endo?
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