Anxious, confused and wondering if I have endometriosis!

[Shelley_w]

Hi. I'm new here so apologies for the long post!

I'm 35 years old. 7 years ago I stopped taking the combined pill and around that time I had some pre-cancerous cells removed from my cervix (LLETZ treatment). Since then I've had various symptoms, which I'm now wondering is because I stopped taking the pill (and consequently symptoms of endometriosis started to show) rather than the treatment to my cervix.

I had already made a GP appointment which is in a few weeks (that was the earliest I could get to see a GP who seems thorough) to discuss fatigue which has been going on for a couple of years (I had put this down to a stressful job but it hasn't improved after changing jobs) and also to discuss pains in my sides, lower abdomen and thighs. After googling my symptoms (I'm a paediatric nurse and always discourage patients/parents from googling but then did it myself)!! I'm now wondering if I have endometriosis.

Over these 7 years I have been seen several times due to abnormal bleeding, I've been diagnosed with: a cervical ectropian (I now wonder if this is actually an area of endometriosis), a ruptured ovarian cyst found on ultrasound (again I wonder if this was endometriosis), dysfunctional uterine bleeding, rectal bleeding (no haemorrhoids or fissures were found). In addition, I have clots when I menstruate, occasionally pain in my right side during intercourse, bleeding during intercourse (usually in the week before a period) and as mentioned already, menstrual pains which radiate down my thighs, pain in my sides, thighs and lower abdomen in the week before a period.

I would have thought that one of the professionals at some point would have picked up on all my symptoms and made the link if it is endometriosis, but after all the reading I've done over the last few days I do strongly suspect this is what's going on! I will write everything down ready for my appointment so I dont forget anything. I'm feeling so anxious about it all. I know I may be jumping the gun and there could be other medical problems going on other than endometriosis.

I'm just wondering if anyone has any advice, suggestions, words of wisdom please ready for my appointment?

Thank you.

[Dangermouse381]

You've sone rhe right thing by writing everything down. Actually go armed to gp with symptoms of endo also as they really don't know anything about it to be honest amd im afraid you have to do all the leg work yourself and demand further investigation.

A word of warning though. If the gp is reffering you, go to a gynae that jas exoerience with endo. I and lots of other women have had pointless surgery where it has been missed, only to find out years later that further surgery is needed to do the job that should of happened in the firat place.

Mine has been discovered from an mri and i am due surgery again soon.

Good luck x

[Dangermouse381 in reply to Dangermouse381]

Sorry.. so many typos x

[Shelley_w in reply to Dangermouse381]

Hi. Thanks for your reply. I'll try push for a referral if it isn't offered. I've seen gynae before but that was a few years ago. Maybe now there's a few more pieces in the jigsaw they might be more helpful!! ☺

[Hidden]

It is surprisingly difficult to get endometriosis diagnosed as it can mimic many other conditions.

I have always suffered heavy and painful periods since they began ( I assumed it was normal part of being a woman). My periods became worse when I came off the pill to try for a baby( 5 years and 11 months ago). I had unexplained infertility for 5 years and 10 months ( till endo was diagnosed). 3 years ago my periods became so heavy I couldn't leave the house and became anaemic. And so painful I ended up in hospital several times ( no painkillers worked). I started cramping and bleeding between my periods and had hysteroscopy and biopsy all normal. GP tried to treat the cycle issues but nothing worked so I was sent to another general gynae. General gynae recommended I was seen by a Fertility consultant-this was done ( we were surprised as we had been the NHS route but had been discharged with trying or IVF and we won't fund your treatment as I have a son from a previous relationship,) intially the fertility consultant believed my issues in my cycle issues to be caused by polycystic ovaries and prescribed me clomid. Unfortunately I started experiencing severe chronic pain in my lower left abdominal side on my forth round of clomid. My gp dismissed my pain ( first he "closed the case " as he didn't know where it was coming from- after ending up hospital a few days later it didn't take him long to dismiss me again and tell me "it's a bit of tummy pain and basically get on with it,") needless to say I haven't spoken to him since. Luckily my Fertility consultant believed me and took my pain seriously. He arranged an urgent scan which was all clear and then suggested a laparoscopy - as part of fertility investigations and to rule out endometriosis. This was done last month and he found endometriosis and removed implants from my pouch of Douglas. Originally he thought the pain was more bowel in origin and was generally surprised to find endo. So yes it can take a while to get endo diagnosis. It can be very frustrating and it's unfortunate that women suffer for many years believing it to be normal.

Anyway all the best with your laparoscopy hope it goes well. Let us know how you get on xoxo

[Shelley_w in reply to Hidden]

Thanks for your reply. Wow, it sounds like you've had an awful time! I'd forgotten to add that I also had a hysteroscopy and biopsy about 3 years ago which were normal. Do you think that would put the GP off referring me again?

[Hidden in reply to Shelley_w]

No I don't think that it should do. Have your symptoms become worse since having the hysteroscopy ( mine had). Maybe record a pain diary- might help the GP see a pattern of some kind. Unless you had endometriosis in the pelvic organs it wouldn't have shown up on a hysteroscopy. Mine was located between my back of my uterus and bowel area causing great confusion for the medical profession!!! You see I had bowel issues as well gynae ones!!!!!!! Pain should never be ignored- pain is a clear indication of something not being OK and should be investigated properly until a cause is found. You must explain the impact this is having on your quality of life. I was very lucky even though the fertility consultant thought the pain was bowel he also thought it was a good idea to rule endometriosis out. Take someone in with you for support- less likely to be fobbed off and explain you need the support because it's getting you down. If that GP doesn't take you seriously keep back until one does ( I did that and found a great doctor who arranged blood tests and apologized he couldn't do more) all my doctor's, nurse practitioners, healthcare assistants and even the receptionists were very kind and supportive at the practice except my own GP. Good luck I hope it goes well xoxo

[Shelley_w in reply to Hidden]

Hi Jess. I had the hysteroscopy and biopsy because of the irregular and post-coital bleeding. The pains have started over the last few months (apart from the one in my side, that's been going on a year or so). I've chosen the GP who seems the most thorough when I've been in the past, so fingers crossed! Thanks again! 😊

[JenniferF28]

Hello, you sure sound like you have a few symptoms very similar to mine, although the pain for me is the main symptom, nothing like period pain but also makes this worse.

My advice, don't worry and don't be nervous, you already have symptoms, being told it's endometriosis for me was a relief. At last I knew what was causing the issues, it wasn't life threatening and I could start treatment. Sometimes the diagnosis isn't a bad thing. (It's getting the diagnosis that's difficult) going private for me was the best thing I did.

Try not to worry and hope everything is ok x

[Shelley_w]

Thank you 😊

[Shelley_w]

So I finally saw the GP, I have been re-referrred to gynae and have an appointment in September. I also have to have another ultrasound in the meantime. She didn't say one way or the other whether she thought it was endometriosis. At least I've been referred and hopefully will get some answers and treatment for whatever is going on!