Just been diagnosed - Endometriosis

[BlueLabrador2702]

Hi all - new here & first post..

Just went for an internal scan at the hospital after 'normal' blood test results. Nurse said she's pretty much certain I have endometriosis & would write to my doctor.

I asked about what happens next & she said I'd need to push my doctor for anything and mentioned they're not too keen on laparoscopic surgery as it's quite invasive & the scan doesn't confirm I have it as such.

Just feel lost & in the dark about what I'm supposed to do next? When I look up managing it, it just says about pain killers? How am I supposed to know what stage I'm at etc? Any help/personal experiences be gratefully received.

Thanks!

[Becs1490]

Hi there,

For me the only way i was diagnosed was by having the laparoscopy. The consultant i saw was dismissing it as growing pains! At 25 yrs old! I wasnt having any of it so i pushed for the op. They wern't keen on giving it to me but im glad i was persistant as i had my answers.

Im in the process of being referred back to the hospital as im getting pains again after nearly 6 yrs of having the op.

I have found the mirena coil helps a lot with the pain and ive tried a lot if painkillers and some just did nothing for me.

I would suggest to keep pestering and pushing for the op so you can get some answers. I hate bothering the drs but when you dont feel right you have no choice xx

[BlueLabrador2702 in reply to Becs1490]

Thanks so much for the response. So without the op, I won't get many answers about how bad mine is, or for them to take out tissue for less painful periods? I'm quite lucky in that as I am on the pill, the periods aren't awful pain wise, but everything else hormones/fatigue etc is about 2 weeks of the month. Also if I want children in the future (quite sure I do) whenever I've come off the pill, the pain has been awful. X

[Becs1490 in reply to BlueLabrador2702]

The lap is the best way for a diagnosis for sure. They told me where it was, how much of it and they took away as much as they could. I would defo keep pushing if its becoming a problem that you cant do anything you normally do. Dont let them fob you off, you know your body better than anyone x

[Pistachio25]

Being persistent is key, my issues started when I was 15 and only got worse. The last 7 years I have been under gyne and have been trying so hard to get my diagnosis, i tried everything they suggested and some of the stuff they suggested helped ease symptoms and make it easier to manage however the flare ups really stopped me in my tracks. Covid really didn’t help as the pill I took to manage my symptoms became unavailable and my flare ups became more frequent. In September I was finally seen by the endometriosis clinic and referred for the laparoscopy surgery I was told that I wouldn’t get the surgery until the middle of 2022. I was lucky enough to get a cancellation appointment and had my op today. The relief of them finding actual endometriosis tissue after 7 years of questioning myself and my body is something else. So my main advice is don’t give up.

[BlueLabrador2702 in reply to Pistachio25]

Thank you for your reply! What I don't really get, is the nurse said she's quite certain it is endometriosis, but can I do nothing else about it really until the laparoscopy, if they allow me to have one as she said they're not keen to refer. But until then, I won't even know how bad mine is? Is that right? Glad to hear you kept pushing and finally got the answers you needed. I hope you heal well x

[CaledoniaSloth91 in reply to BlueLabrador2702]

I'm not diagnosed, still waiting for an ultrasound, but just wanted to jump in with some info I found that might help you From what I gather, the laparoscopy shows scar tissue and adhesions on organs which are caused by endo. Until they know the extent/amount of tissue/adhesions, they cannot say what stage you're at. It seems it's a tricky condition to verify unless they get invasive. I'm waiting for my ultrasound but know that alone won't diagnose me. Ugh. It's a long and stressful process, so I feel your pain!

Good luck on your journey <3 I hope we both get answers soon!

[BlueLabrador2702 in reply to CaledoniaSloth91]

Thank you! Yes, so tricky to diagnose, good luck to you too <3 x

[Pistachio25]

I believe that they are only able to diagnose endometriosis via laparoscopy surgery, I did once read something about a blood test however I was never offered or knew for sure if it would be able to diagnose. I have tried a lot over the years personally I found the best way to manage my symptoms were having the coil fitted however this did not completely work so I also tried and tested a few different contraceptive pills to control periods and not bleed as often. They often told me to take pain killers however I felt they were pointless as my pains came in only what I can guess contractions feel like(I haven’t had children) -why would I take pain killers for a pain that would be gone by the time they kicked in and I never had a warning either that the pain would come? I personally found male doctors more helpful and proactive but that is only my personal experience.

[EternalSunshine87]

I was diagnosed very quickly after going to my doctors. I know this is not the case for many others. At first I had ultrasounds where they could see a cyst, which appeared and then reappeared on the other side etc. Mine was found through an MRI. I was on my period at the time which may have helped. I was then referred to the bowel specialists where they did a colonoscopy. I requested that I went to a specialist endometriosis clinic. When I was referred there, they did another MRI and then they wrote a very comprehensive letter about everything they found. We discussed my options and surgery isn't something I'm interested in yet. I definitely felt more at ease when I went to the specialist centre.

[BlueLabrador2702 in reply to EternalSunshine87]

Thank you - this is really helpful. I don't feel the need for surgery yet, I'd rather find out as much as I can without it first. Did you get the MRI/colonoscopy through the doctors? Hope you're ok!

[EternalSunshine87 in reply to EternalSunshine87]

After I described my symptoms to the doctor I got referred to the hospital for the ultrasounds. From there, they then decided to do an MRI and then a colonoscopy. After some discussion about my options I was then referred to a specialist clinic at a different hospital as the one I was at didn't have a specialist clinic. They wanted to do another MRI. They came out with slightly different results to the one I had previously. The first MRI showed that the endo was wrapped around my rectum, but on the other one it seemed to be 12cm from the rectum. The people at the specialist clinic seemed to be more optimistic then the people at the hospital. I think its always worth going to a specialist place if you can where they are more knowledgeable.

[BlueLabrador2702 in reply to EternalSunshine87]

Thank you so much! I was lucky in that I went to the doctor about a bad period & right away she booked my ultrasound which suggests the endometriosis. I will call back in the new year to try sort the MRIs etc as a next step. Thanks so much!