Endometriosis UK

Not yet diagnosed and stressing! On top of the pain!

Not diagnosed yet- waiting for lap but potentially 12 week wait. I keep ring to push it through and only saw gynae 2 weeks ago. They must be sick of me but I'm in pain and the anxiety surrounding it all is driving me crazy.

The symptoms are typical of endo- I keep stressing it's something even more serious!! Endo is serious enough but I panic it's worse even tho upto date with smears and had numerous pelvic exams, X-rays,scans, blood tests and professionals tell me it's not. Also had routine swabs n no infec or sti.

Had one dodgy smear but the one 12 months ago was clear.

Been off work and tried to go back this week but struggling- pain bad when get up, have a bit of relief for 2-3 hours with painkillers and then gets worse n worse through afternoon and evening.

Sacral area is the worse pain and legs- can lie on back for long at night? Anyone else have this?

Got the pelvic pain too- that was worse last week and now back is worse this week?

I get the shooting pain up my bum too from time to time eps during period.

I have very retroverted uterus too which I feel like I wanna grab and pull back into position. It really irritated my back!

Period always starts of brown before red and has been this way for last two years since had my first child. Seems slow to start and I'm that pent up I'm gagging for it to start. Horrible way to out it but I'm feeling really low and alone about this.

Partner doesn't understand but think he is worried too.

8 Replies

Sorry to hear that you're struggling. It's so hard I know but you must try to stay calm and relaxed and don't stress before you even know what you're dealing with. I had a lap 2 and a half years ago - had X-rays and ultra-sound prior to that to rule anything else out and as all clear had the lap to diagnose endo. It was lasered and much better for a couple of years. I have symptoms again now so waiting to see gynae again but will end up with another lap I think. I have been in combined contraceptive pill for 9 and a half years but main purpose since op has been to try to help endo as it can slow down process of it returning. I'm now off it after it being changed for 2 months and symptoms getting worse. Will let gynae decide what's best for me to be on. Sounds like you're having a terrible time with pain - are you taking the pill and has a painkiller mefanic acid been prescribed by doctor for pain during periods? I had very bad symptoms like yourself but was fortunate to only have endo slightly and not severely. My tubes and ovaries healthy - praying that this is still the case! My gynae told me it can often be the way that women have severe symptoms but only have it slightly. There's no rule to say bad symptoms, bad endo so please remember that. Stay strong x

1 like

Aww thankyou! This is a very supportive site- never used anything like this before. Yes must stay calm. I have waves of calm then waves of anxiety. Thanks for support.

That med for periods is interesting and I haven't heard of it before- il ask when see gp again Monday.

Not one the contraceptive pill or anything either- I was a few years back but then had daughter who is now nearly three and we were trying to conceive again but no luck in last 12 month and with this pain I really don't feel like it. Want to get back to normal.

Hope ur second gynae visit goes ok for you- I've read that it usually comes back when treated- right now id take a two year break at least lol

I think once I can get a diagnosis I will be better mentally about it all. It may not be endo who knows.

I'd never come across it before and not thought about it until gynae suggested it. We will see...

Keep plugging away at the system!

Have you got any children? My women bits not been right since lol


I haven't got children no. I'm 26 and single so not planning on any in the near future but I do want children one day and certainly don't want that option taken away from me at my age.

Yes it does come back but being on the contraceptive pill slows it's progress down. Since ive stopped taking it I have noticed symptoms are worse already and its only been a week.

Yes, do ask about mefanic acid - it's specifically for period pain.

I find it difficult with work as they don't really understand what it is and just think it's bad period pain which I find very frustrating as its more than that


I'm 26 years old too :)

I'm married and the plan was another baby but defo on hold at min! I'm adopted myself so I wouldn't mind adopting. Just don't want this pain.

Oh i understand how u feel regarding work- I've just rang in sick again! I feel awful- I try so hard to go but I can't sit there all day today like this. Got no energy to be social with people. These symptoms always there.

Luckily my boss understands- she had endo and ended up with hysterectomy later in life- she had fibroids and cysts too though. However, don't know if other senior management really understand.

Had lots of things at work I was looking forward to too and it's all gone wrong!

What symptoms do you have on a daily basis?


I am always tired but to be honest have never connected that with endo until reading this forums so I will mention that to my gynae next month. I get the odd shooting pain in my lower abdomen which tends to be the week leading up to my period or part way through which is probably ovulation. I get severe lower back pain the week before period as well and unbearable period pain to the point I am sick. To be honest though, I think I am quite lucky as I don't have problems every day apart from the fatigue.

And you know that tou can fall pregnant and carry a child so don't stress about that, keep trying and who knows


Ye- trying to relax today now and unwind.

Hot water bottle and tv! Rather be at work tho. If it was a cold if live a day off but not with this.

My daily pains are similar but got a different edge to period pains- hard to describe. Defo feel like everything pushing on sacrum. Leg pain bad today too.

Anyway thankyou for support zoegoo88.


Definitely sounds like endo, especially the rectal pain. If I were a betting woman, I'd bet money that you have it in the POD. I understand the anxiety about it being something worse - I've been diagnosed for ten years now but my mum currently have stomach cancer that had spread to her ovaries and throughout her pelvis and her symptoms are so like mine, I panic that if I ever got anything like that, I would never know about it.

Having said all that, endo IS the most likely scenario and something worse probably wouldn't cause all of those symptoms together. You need to try and stay calm - focus your energy on getting some better pain relief from your GP while you're waiting for the surgery. 12 weeks isn't too bad at least you know it's coming - and it will be much easier to bear if your pain is managed.

If you don't already have one, buy an electric heat pad - they're miraculous. I swear by mine which is Beurer XXL flexible and washable pad rather than the horrid plastic ones I used to have.

Also you can focus on getting ready for the lap. Get yourself some peppermint tea or capsules, some arnica, some oversized nighties and big comfy granny pants and some thin, long sanitary towels - I always bleed after laps and the ones in the hospital are awful. Also, a comfy robe and slippers that you can wear with those thrombosis stockings and that slip on without needing to bend down. I always treat myself to some nice new bedding and pjs too :)

Most sources say that recovery for a diagnostic lap is one week but it has always taken me at least three weeks whether they treat endo or not. You have to remember that your outsides look mainly fine but you'll be very sore inside. The worst part of recovery for me is the gas pain in the shoulders which affects me badly. I've had it last one day or up to a week after my last one. Peppermint tea, fizzy drinks and back rubs are your best bet.

I know it's scary but don't panic - it will come round soon enough. X


Aww thankyou that very supportive and constructive. Yes think il focus on that and stay calm. I love a good list so il start a list for my lap op.


It's awful the pain isn't it! Never realised until now how bad endo is.

Yes I'm expecting the three weeks. I work in education so by the time I'm "sorted" gonna be march- nearly starting to wind down.

Not a thing that can be quick fixed ay?

A lady at work said go private but I bet it would cost too much money for me.


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