Posdible endometriosis help please - Endometriosis UK

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Posdible endometriosis help please

Fallenleaves profile image

Hello ladies,

I hope you don't mind this post but I've been concerned recently that I may have endometriosis. I'm 40 and have two children. Is it possible to be diagnosed or get symptoms this late in life ?

My symptoms of pain on my lower right side started up roughly about 5 years ago. Pains were so strong I was in A&E but a cause was never found because I wouldn't let them do a CT scan. I had an ultra sound scan then, but nothing seen. Also they wanted to do a endoscopy in my bowel. I didn't have that done either, through fear.

I struggled on thinking it was IBS until I got pregnant in 2015. (Planned) the pain seemed to disappear during and after pregnancy. About a year ago it started again. I usually got bowel symptoms with it. Now I just get constipation with it.

My pains are in my appendix area, very deep and as painful as early labour pain but this seems to happen around ovulation and during my period. The rest of the time there's a constant ache as if something is there all day and night, slightly tugging away.

I have made an appointment with my GP for next week but what should I make sure they look for ? How can I make sure they check me for endometriosis? I've read Drs can mess about and my GP always find me off.

One more thing is I have migraine every month, and regular headaches along with daily tiredness, which I was put on vitamin D for.

Any helpful advice gratefully received.

Thank you

11 Replies

Sorry I mean, my Dr *Fobs me off* phone typo

Hey lovely,

I believe endo can start at any time. So it’s worth getting checked Hun. It might help answer some questions. No answers is the hardest.

You have symptoms similar to endo and they say pregnancy helps, so worth going to the doctor to raise their awareness of what you are struggling with 😘.xx

Just so you know though Hun, endo isn’t always picked up via ultrasound. I had an ultrasound and got told I was fine. So assumed I was. It wasn’t until I was referred to a gyno they told me it isn’t always picked up via ultrasound and ba ba bing, laparoscopy done and they found it.

You may need to have this if they suspect it too but don’t panic. Read my post it’s not as bad as you think 😘.xx

I think Doctors want to rule out everything before they get us checked for endo. I initially got diagnosed with aneamia and thought I was sorted. I wasn’t because there was no route cause as to why I had it but the issues persisted. Again I know have the answer.

Keep me posted Hun and hope they listen to you.xxxxx❤️

Sounds very similar to what's been happening to me. I have lower right abdominal pain and bowel symptoms. I can get really tired. The pain gets worse with exercise, bending, sex, going to the loo. I'm 39 and have already had a colonoscopy which was clear. I've had an ultrasound to check for ovarian cysts - also clear. I've had an MRI to look at my lower bowel and I'm waiting for the results. I've also been to a gynaecologist and she thinks I either have adhesions from my csection or endometriosis. I'm going back to see her again in January. I've since been back to my GP and she thinks it's more likely to be endo as the pain is now more cyclical. I sometimes get the pain for longer stretches but I've definitely noticed it usually happens just before staring my period. So in summary, definitely go to your GP and you'll probably have a few trips there and to other specialists before getting a diagnosis. I first went to my GP about the abdominal pain last summer. The gynaecologist has suggested I have a laparoscopy if the pain is no better when I see her in January. I am on the pill which they're hoping will help - it hasn't massively. The Mirena coil has also been suggested. Good luck with getting a diagnosis xx

Thank you for your replies, they're very helpful. It seems I'll probably be given the run around for a while yet with tests maybe. Im very nervous of the bowel camera procedure if they suggest that again. Can they pick up if you have endometriosis from that too ?

What was the MRI like ?

I'd rather have a laparoscopy and see first, I think. I know they want to do other tests first.

These pains are so bad now though.

My mother, grandmother, great grandmother and auntie all had a hysterectomy due to heavy painful periods with fibroids and cysts. Makes me think they may have had undisgnosed endometriosis.

PottsL profile image
PottsL in reply to Fallenleaves

To be honest I've had four colonoscopies (due to family history of bowl cancer) and they're ok. Obviously not that pleasant but not painful. You can have a sedative and I've always gone with that option. The preparation isn't great - a low residue diet and then you take a drink to make you empty your bowel. Also the MRI was a lot better than I thought because the hospital I went to had a machine where it's open at both ends and was wider than normal. Think they would generally do less invasive tests pre a laparoscopy. Good luck with it all and definitely be persistent.

jjeemm profile image
jjeemm in reply to Fallenleaves

Hi Fallenleaves

Just seen your latest message. Re. my colonoscopy, I'm afraid to say that in my case the procedure was REALLY painful.. My bowel surgeon insisted that I should have the procedure done while I was having a period, when I was bleeding from my rectum, and I did actually pass out with the pain. The results came back as 'normal' although because I was in so much pain, they couldn't pass the tube up the full length of the colon. Apparently I have a 3cm nodule which has attached itself to the sigmoid colon, but this wasn't picked up from the colonoscopy.

I also had a 'normal' result from a transvaginal scan...so these tests are not necessarily always able to detect endometriosis, even if it's severe.

Wishing you the very best of luck in getting properly diagnosed. It really sounds like, given your family history, you certainly might be suffering from endometriosis....certainly you need to see a gynaecologist.

Thank you. I will be, just hope they listen. Can't take this pain anymore it's just never ending now.

Hi Fallenleaves

First of all, I'm sorry to hear you're suffering! And second of all, sorry about the really long post which follows!!!!

In answer to your question, I'm now 49 and have only just recently had a diagnostic laparoscopy on 8th September which confirms that not only do I have endometriosis, it's severe endometriosis: the back of my cervix is stuck to my bowel, one of my ovaries is 'bulky' and stuck to my ovarian fossa, the other ovary is 'partially' stuck to the other ovarian fossa, my pouch of Douglas is 'obliterated', along with uterosacral ligaments and it looks like I have a 'bulky' uterus, indicating adenomyosis.

For years now (since 2004) I've been backwards and forwards to various GPs complaining of abdominal pain - it's always been a stitch-like pain in the lower right-hand side of my abdomen...I've been constantly bloated, full of painful gas and had IBS-like symptoms. I was told that I probably had trapped wind or else I was just constipated and needed to eat more fibre...basically the usual fobbing off. Then in 2014 every month for 2-3 days I started getting TERRIBLE pain going to the toilet whenever I had a period. I've actually come close to passing out because it's been AGONY! I started bleeding from my backside and also passed bloody mucus even when I passed wind! I'm still suffering exactly the same symptoms to this day, so much so that it's become impossible to leave the house when I have a period and you can imagine the effect it's had on my life.....By the way, I've never had children...I didn't try and find out why (with hindsight I should have because endometriosis might have been detected a lot sooner) but now it looks like the endometriosis may have also led to infertility in my case.

I went to see my GP in 2014 who examined me and said she'd refer me to a bowel specialist. A couple of days later I received a leaflet in the post offering me an appointment to see someone since it was suspected I had bowel cancer!!!!

To cut a long story short (!) I ended up seeing a bowel specialist for 2 years, who after various tests, including a VERY painful colonoscopy, concluded that I must have constipation and prescribed Dulcolax!!! Due to this misdiagnosis/non-diagnosis, I ended up being left in excruciating pain every month, still not getting the right treatment I needed.

After numerous subsequent trips to the GP and being fobbed off with the usual rubbish 'Many women have period pains, you need to take a pain-killer...' - I finally found some information about endometriosis on the internet and asked my GP to refer me to a gynaecologist.

I finally saw the gynaecologist at my local hospital - which luckily happens to also have an Endometriosis Centre - last August.

I was initially seen by a woman (clearly NOT the gynaecologist I'd come to see) who asked various questions about why the GP had referred me to see the gynaecologist (actually I'd referred myself). When I described my symptoms in detail, including how long I'd had the symptoms, she said 'Well, it's very unlikely to be endometriosis, because you're too old. I'd go back to the bowel specialist if I were you' and I was more or less shown the door!!!!!!

Only because I INSISTED on seeing the gynaecologist I'd come to see was I FINALLY allowed to have a really painful internal examination by the gynaecologist who also removed a polyp. 'Mmmm....yes, it looks like you might have endometriosis...I'll book you in for a laparascopy'.

4 months later and no appointment was made. I went to see my GP AGAIN(!!!) to ask whether or not I should chase up the appointment or leave it...having read all about laparascopies on the internet I was terrified about having one, but was resigned to the idea that maybe if that's what it took to receive a proper diagnosis and treatment, then so be it....The GP said 'Given your age (I was 48 at the time) I'd leave it if I were you...you're pretty near the menopause anyway, so just ride it out and take some pain killers'.

So.....a whole year later, feeling worse than ever, and after deciding that I just can't put up with this agony any more, in August this year I went back to the hospital to see the same gynaecologist. She looked amused when she saw me and asked why I'd waited so long for the laparascopy given the 'severity' of my endometriosis!! ('Severity'?? Hello??) I told her that I'd never received an appointment and wasn't sure if I really needed one? She then said 'You must have a very high pain threshold!' and practically laughed...(honestly, I'm not imagining it!!!!). She then immediately went on to say 'Given your age, we'd probably recommend a hysterectomy'...just like that...without even having established how severe my condition was, where it was located...let alone how I might react to this statement, having been left alone for a whole year not even realising that my condition might be severe!!!

So....returning to the present - after the laparascopy in September, I received a letter detailing the extent of the endometriosis (full of technical jargon and acronyms which no-one but an expert would be able to understand and without the help of the internet I would never have got my head around) from the hospital. No-one came to see me after the operation to explain what had been found, by the way - the gynaecologist saw me in the recovery room for all of 30 seconds while I was just coming round from the anaesthetic and said she'd found endometriosis on my bowel and I'd need further surgery, but that was it.

So, here I am....just about!!!

My next stage is to have an MRI scan and then I've been told that I'll need to have appointments to see a gynaecologist as well as colorectal surgeon to discuss my next round of surgery.

My best advice to you now is that you REALLY MUST push hard to see a specialist gynaecologist in an Endometriosis Centre. There's a website with a list of all the accredited centres in the country: bsge.org.uk/centre/ Do be prepared to be told that you'll need a diagnostic laparoscopy...but PLEASE don't be too afraid of this...it's a necessary evil and you will recover from it.

PLEASE take warning from my experience and the experience of so many unlucky women who for YEARS have been fobbed off and told that there's nothing wrong with them.

If I've learned anything at all from all that's happened to me and to others, it's that I'm not going to rely on the 'expert' judgements of the medical profession, who often at best lack the necessary knowledge but carry on arrogantly telling you that they know best, and at worst just don't care. From now on I've come to realise that if I don't take control of my health, no-one else will...and although it goes against my nature, I'm now so angry that I'm going to start to 'kick ass' and do whatever it takes to get the medics to finally LISTEN to me!!!!

There's LOADS of information on the internet about endometriosis...keep on searching...you'll find that women can have endometriosis at any age - even beyond the menopause in many cases, unfortunately. Women with endometriosis can also suffer very painful migraines, like you. You really have to do some research, because the medical profession is often sadly so ignorant about the condition....knowledge is power and if you quote research at medics, they can't contradict you!!!!

If necessary print out the NICE guidelines to show to your GP cks.nice.org.uk/endometrios... ... Women are waiting FAR TOO LONG to receive a proper diagnosis for this incredibly debilitating condition...Please don't just leave things because you're afraid of contradicting GPs or afraid of seeking the right help. It's YOU who has to live with constant pain and worry!!! If you read through the posts on this forum, so many women have had so many operations and been through so much, but they're still here!! Please don't give up!!!! We owe it to ourselves to push hard to get the right treatment - the treatment IS out there...but the longer you leave it, the worse the condition can get...

Sending you strength and courage - please don't allow yourself to be fobbed off any longer.

All my warmest wishes to you, Fallenleaves and sorry again for the very lengthy message!!!!

Oh my word. You poor soul. I thank you for taking the time to tell me about all that. This is what I fear to be honest, being messed about by those who should know what they're doing, that's very worrying and terribly stressful. Im glad to hear that at least you now know what you're dealing with.

I will try my best and I'm not looking forward to any of it now.

The best of luck to you dear. And thank you again.

Hi Fallenleaves

Thank you so much for your concern - you're very kind!

I'm sorry to have sounded so negative!! It's just that I still can't quite believe that women are treated so badly and in my case, why didn't I do something sooner?! You're right, though, it is much better now to know what I'm dealing with, and I know you'll feel a lot better too once you have a proper diagnosis...it's the fear of the unknown at the moment. Please don't despair and don't give up!! You CAN get through this horrible time of pain and uncertainty...but the important thing is to be persistent and firm with the medics and not just push your concerns to one side allowing your symptoms to get worse (as I did). We all have a right to receive the best possible treatment available...please don't take 'no' for an answer.

Deep breath!!!!

Sending all positive vibes your way :)

You've inspired me to keep going now. It has not been positive for you so far with all what you've been through and still are going through. It's terrible.

I'll have to start researching more as I know only basics. Im certain it must be as it's not gone away and has only got worse. It even hurts when I empty my bowels now, for ages after.

Thank you dear.

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