WAITING FOR DIAGNOSIS

[ch2018]

Hi, I dont really know what to write here and is my first time on this site but wanted to hear of other peoples experiences and speak to those people as talking to family and friends doesn't feel the same.

I have always had issues with my periods but at the beginning of this year the pain that I was feeling unbearable. My periods became conpletely irregular but as I was experiencing diarohea and constipation I went down the path of there being something wrong with my bowels first as I had never heard of endometriosis and chrons disease runs in my family. After a colonoscopy and nothing showing up I was being referred to a dietrician and it was at this point I mentioned my periods. This lucky enough lead to a ultrasound. I have been told it is likely to be endometriosis and I have 3 large cysts on my ovaries. I have now been seen by a gynecologist who discussed my ultrasound further. I am now waiting for an MRI scan for my cysts and either way I will have to have open surgery to have these removed. But I am still waiting to be fully diagnosed with endometriosis.

I was wondering if anyone else has had similar experiences and how long it can take to be diagnosed.

Thabks for reading

CH

[princessk09]

Hey, it took me about a year to get diagnosed with endo and during my laparoscopy they removed it and an ovarian cyst. This was all done through keyhole surgery thought which is minor.

My periods are still unbearable post lap but everything is still healing etc. I get really bad bowel problems during my period yet nothing showed up on the lap but it can be normal as hormones mess up your digestion during periods etc.

If you ever need someone to talk to, you can always PM me. My family never believed me until I had surgery xxx

[ch2018 in reply to princessk09]

Hi Princessk09.

What do they actually have to do to diagnose you? Is this done when they do the surgery? Did you have to have an MRI? I have so many questions that I feel like the doctors just dont have time to answer. I got told to prepare any questions I had for my last appintment and every single questuon was just answered with "i will only know after your scan" and i felt like I was taking up too much of their time.

My family and friends are very supportive as in they believe there is something wrong with me. I think its more the "how are you feeling today" and they expect something like im much better or that im feeling good, when i rarely ever have these days, which makes it hard to talk to them about it.

But it does feel much better talking to others who are going through the same things.

Thanks for your reply. I really appreciate it xXx

[princessk09 in reply to ch2018]

The only official way is through surgery. I didn’t have an MRI just an ultrasound which came back clear but during surgery they found a large cyst. Xx

[lou840]

Hi, I was diagnosed on Wednesday as having stage 4 deep endo of the bowel during a laparoscopy. I have been down various routes to get a diagnosis, have chronic hip pain past 3 years which they dismissed as various other things like hypermobility, no glute muscles, hip tear, over doing it at the gym etc.. The symptoms I noted to them also included extreme IBS, chronic exhaustion, excruiciating periods, loss of sex drive and pain on the very rare occasions i did have sex with my boyfriend (told by two female docs that this was just in my head). I was sent for a colonscopy in spring this year and couldnt even handle the air being blown up there, the tests came back as fine as did the ultrasound of my bowel and she told me it wouldnt be endo. She sent me to a dietician (sounds like a similar story to yours!) who put me on a low fodmap diet and i am gluten free and have very little dairy - this diet has helped very slightly with the swings between diarrhoa and constipation.

At the same time i was seeing my GP to get a coil fitted and after several attempts they couldnt fit it so was sent to a gyno who referred me for a laparoscopy. In my mid 20s i had 5 attempts at having a coil fitted before they managed to do it but they never looked into the reason why and 2 years ago i felt it had dropped so asked them to remove it and had a ultrasound at the time which showed one slightly enlarged ovary which they dismissed at the time as just being the side my period was coming from.

From seeing the gyno it took 10 weeks for my laparoscopy and then one week on I have my mri this weekend to see how deep the endo is into my bowel. Not sure how long the wait will be for the next stage to remove the endo though but i might go private if it is many months. It was a huge relief to finally have a diagnosis as it confimed i am not "crazy" and its not ""all in the head" although I've not a clue what to expect next but i really hope you get some answers soon x

[ch2018 in reply to lou840]

Hi lou840 Thank you for your reply. 8ts mental how hard it id for them to diagnose it and how many different routes it could be before being diagnosed with endo. I am having an MRI first 🤷‍♀️ and then I will need laparotomy to remove my cysts. But I'm not sure time frames or anything. Im just waiting for a call. Believe it or not all of my experiences have been with private as I got the choice.

Yes it definitely is much better knowing now what the problem finally is. The not knowing part was killing me. I was actually getting to the point of thinking it must be in my head.

Thank you for telling me your experience and hopefully you dont have too long to wait for your next procedure xx

[lou840 in reply to ch2018]

Have you been given the date for your MRI? I dont know timelines yet either as this wont happen for me until after Ive had my mri when I have to go back to my gyno to discuss options.

This site has been a great site for answering my questions / concerns over the past few days, I hope it helps you too. x

[ch2018 in reply to lou840]

No I had my gyno appointment on Saturday and I've been told I will get a phone call this week for my MRI and more bloods being taken on Thursday and then a follow up with the gyno but hopefully it wont be too long x