Endometriosis UK
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How did your pain start???

I was wondering how the pain started for some of you girls? I've always had painful periods but since ive been bleeding constantly I haven't had much pain until the last three months. I noticed that when my first GP palpated my pelvic area there was no tenderness. When the second GP did it, it was slightly tender but not painful. Now any pressure in the same area leaves me clinging to the ceiling. The pain is right in the centre over the womb. Originally it was only an issue during periods or later when pressure was applied. But now, over the last few weeks I have been having sharp pains there (it's like that part of my body has been hooked and someone is tugging on it).I'm also getting a dull ache/ occasional sharp pains in my lower back and left hand side.

I understand it's no where near as painful as some of the things you have suffered on here. But I was just wondering if it started off the same for anyone else? Any input would be greatly appreciated xxx

10 Replies

Sounds like me theres no constant but when i get sharp pains oh my gosh! It builds up towards my time of the month, lower back similar to sciatic, stabbing in my left side, shooting pains though my minnie!! Sorry tmi. I havent been diagnosed but given coil just in case! Also suffer with ibs but sure its all related to endo or adenomyosis just wish gps n my gynae could see it. Have u ben diagnosed? Xx


Hi claireyfairy,

Thanks for the reply. Hope you're well.

I haven't been diagnosed yet, after years of complaining to my GP I started continuously bleeding in December. It did start in 2010 but I thought at the time it was the Depo jab causing the prob, it was actually the other way round. Ive been sent for blood tests and an ultrasound when they came back normal my doc didn't want to know anymore. But I changed my medical practice last month and have my first appointment with a gynae on Friday, YAY!

I also suffer with IBS like symptoms but cannot find a single food that sets it off, what can send me running to the loo in agony one day, I can be completely fine with the next day!

Minnie! That's one I haven't heard before!!! :D

I have also been offered the coil, but I have refused it until I get a definate diagnosis... I didn't want to have it and get rid of my symptoms. Then whatever is causing the problems get worse and I don't have a clue til I come off it!!

What tests have they carried out on you so far?? Have you had a Lap?



Ive always had womens probs been on soi many different pills had depo like u i bled all the time! I had a lap nearly 4 yrs ago for unrelated abdo pain n they said i had pid just put me on antibiotics. Im at the point of trying anything. My gynae said its unlikely i have endo as she said 'it doesnt feel like it'!!! Lap is last resort.

Ive had ultrasounds blood tests, swabs, smear and lots of internals!! but still nothing else had come up.

Sounds like ur just beginning ur journey like me. Seen gynae once n just reffetred back to gp with coil n painkillers!!!

Good luck on fri please do let me know how u get on xx


You were right about the journey!!

I was completely fobbed off by the gynae and told the bleeding will stop on it's own (even though it's been over 2 years) and the pain is probably IBS. Luckily she did agree to see me again in March. In the meantime i've got to try and lose weight so she can't blame that as well when I go back.

Hope you're well xxxx


My pain started when I was about 12, so about a year after my periods started. The pain was so bad it made me vomit and pass out :( I was put on the pill and Ponstan which sort of helped for a couple of years, but as time's gone on it's got worse and worse, and my list of symptoms has got longer. I'm now 27 and have only just been diagnosed with endo.


That's horrible! Why have they taken so long to diagnose you?!

Have they found a way to treat it now?

Hope things get better xxx


I kept getting told there was nothing abnormal about my pain etc., I was sent for scans which showed nothing (endo doesn't show up on ultra sounds!), put on all the different contraceptive pills under the sun and different pain killers, told I had IBS etc.. It feels like they just do more and more to fob you off each time. I'd almost given up hope until my mum suggested I might have endo, after I started getting rectal pain (sorry TMI!). She knew it was not normal and so off I went again to the GP... they finally referred me but the gynae also tried to fob me off and said it could be nothing, why go through a lap blah blah.

I am now at the point where I'm getting a second opinion. I had a diagnostic lap in June which finally confirmed I have stage 4 endo, but my gynae refused to operate because it's too complex for him. I paid to see an endo specialist privately who told me I'm going to need 2 surgeries and injections which try to shrink the endo. I'm waiting for an appointment with him at his NHS clinic now, but hopefully my first sugery will be in a few months.

Your story is typical of so many, myself included! Your symptoms sound like endo to me, although obviously I'm not a medical professional! So many of us have been told we have IBS it's unreal. Like you I have tried to figure out what food might set me off, I thought it was garlic for a while, then onions, then cheese. There is no pattern because I can have it one day and be fine, but not the next time I have it. I hope you get someone who takes you seriously, just go in armed with questions and don't take no for an answer. The only way to diagnose endo is by having a lap xx


Hi I was lucky in a way as I never suffered badly with periods just the normal pains and I only used to bleed a lot for a couple of days then hardly anything. I used to have most of my pains in my lower back and really became aware I had a problem when I realised I wasn't get any breaks when I had no pain. My dr was really brilliant and after an internal revealed some tenderness on my left hand side I was sent to have a scan before I saw the gynea which revealed a fibroid but not sufficiently big enough to be causing the pain. When I saw the gynea she examined me then said she would like to do a lap to investigate as for a year or so prior on an off I had had quite a few water infections and the drs thought I might have pid which came back clear. So I had the lap and endo was found which made a lot of sense to things that had happened to me over the years especially being misdiagnosed with IBS years earlier. So from when i first went to the drs with problems beginning to end it took me about 8 months to get diagnosed which compared to a lot of ladies is good going.


I have always had very painful periods since they started age 10. My Mum used to give me co-dydramol for the pain after I was 12. She suffered too but was always told it was normal so that's what she told me. My pain gradually got worse aged 15-16ish where it'd be so bad I'd crawl to the bathroom to get in a hot bath. Looking back it really wasn't normal. I had two children when I was 21 and 23. My peiods never really got back to normal after having my first and then I bled for 16 weeks after having my son. At my 6 weeks check I discovered my ex had cheated and given me chlamydia whilst pregnant....hence he's my ex!

My symptoms got loads worse after having my son :( it's so hard looking after a toddler and a baby on your own when you hurt that much. After going to the gp's for 3 years, being sent to a councillor because they thought it was in my head, I finally got an appointment with a gynea age 25. They did a lap where they lasered off a couple of small patches of endo and inserted a mirena.

5 weeks later I had to have the coil removed because I'd got a rare infection from it (so frustrating). I tried every other type of contraception and they all made me constantly bleed. Had another lap age 27 where they found a sticky ovary and adhesions (caused by the infection from the mirena)!! They found no endo!

After that lap I got sent for cognitive behaviour therapy because the GP thought, AGAIN, that it was in my head!! :( I was then treated for IBS and tested for all sorts of bowel problems, all came back clear! Of course, how can it be bowel related when all the symptoms go with my cycle?

I finally went to a different GP who refered me back to the gynea immediately. Had that appointment about 3 weeks ago where he diagnosed me with adenomyosis....so yey it's not in my head and I'm in no way a mentalist!! I'm now 29 so technically it's taken me 19 years to get diagnosed which is ridiculous!!

I now take norethisterone (high dose progesterone) for 6 months at a time so only have 2 periods a year and it gets rid of most of my symptoms....only down side is it make my other condition worse but thats a lot easier to cope with than the hideous pelvic pain I had!

Wow, sorry I've ranted...hope you're all having a pain free day xxx


I originally went to my doctor because of continous bleeding, having an internal examination found a lump which was painful, blood tests followed and my ovarian cancer count was slightly higher than normal, was then sent for a scan and discovered a cyst on my ovary, with a chocolate cyst comin off that. Was rescanned 3 months later and the cysts still remained but no significant change, in this time I experienced servere pelvic and lower back pain. Would wee continuosly and felt totally wiped out. The consultant told me they would remove the ovary, if I wanted, as it was causing pain but normally because of its size they wouldn't. It wasn't until my op that they discovered the endo, and my womb attached to my bowel because of it. Both my consultant looked a bit sheepish on its discovery and now understand why I was having so much pain, and not making it up!


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