Diagnosed with severe endo but no surgery

[miss_marple]

Hello everyone,

This is my first post but I have been reading the posts in here to help inform myself as I have been attending gynae appointments to assess cysts on my ovaries.

I had my second appointment at hospital this week and they confirmed the cysts, one of each ovary and up to 6 cm in size, are endometriomas. They also confirmed I have scar tissue and adhesions in my bowel and pelvic walls and that my ovaries are stuck together (kissing, i hate this term!). The head consultant scanned me and confirmed the endo was extensive and severe - I guess lots was visible on the ultrasound so no need for diagnostic laporoscopy in that sense. However - I have no pain - so all of this has been a total shock to me, I didn't even know what endo was a couple of months ago. Because I have no pain (and I know now I am lucky for that) the consultant said he did not want to operate, it would be major surgery and I am not in pain, and may cause more problems than it solves.

We are TTC and whilst its early days (5 months) the only advcie I had was to keep trying naturally and then get referral to a fertility specialist. They were really nice at my appnt and by the end I was in floods of tears and left really emotional. I desperately want children and it hadnt even crossed my mind I wouldnt be able to conceive naturally.

What I am so confused about now is that I am having no treatment - won't my endo jsut get worse? Won't the cysts get bigger and surely there's a chance my fallopian tubes are blocked too. Do I really need to wait 1 year before getting a referral to a fertility speciality? I feel like I've just dropped out the health system with no plan and nothing to hold onto. Any advice from anyone as to my next steps would be really appreciated, I feel like I've been hit by a truck!

xx

[dawntildusk]

hi. I too attended a gynae appointment and was told I had a 2" endometrioma and stage 4 endo following a physical examination. the plan then was to have a lap to remove cyst, ovary, tube, and endo. I had my operation just over 2 weeks ago to find none of the above. I spent months worrying about the future and it was all for nothing. I do have problems with my periods and although i am pleased they were wrong in one sense i now feel like im back to square one. please dont be disheartened. sometimes contraceptives can take a while to get out of your system so keep trying. but as many on this forum have said before you do have to keep going back. you know your body better than anyone! good luck x

[Mabes in reply to dawntildusk]

I agree with DawntilDusk - I was just talking to one of the consultants today before I got discharged and he said that what we experience (symptoms/pain), what they see on scans/tests, and what they find during a laparoscopy do not always match up. It's very frustrating because you can be told you have one thing and they operate and it's not there or it's a different problem to what they thought.

I believe that on the one hand you have the right to a diagnostic lap to confirm all this and to treat whatever's there, on the other hand surgery can cause more scarring/adhesions and potentially pain. In the latter respect, I can understand why they are cautious especially in the absence of pain. However, if endometriosis is affecting your ability to conceive, then that caution is no help is it?

Have you been to one of the accredited endo centres? Is your gynae an endo specialist? If not, then I'd ask for referral to one and get a second opinion. As you are TTC you can't really use the hormonal methods to control the spread. From what I've read, excision (not laser) of endo gives the best chance at conception. You might wish to do some research to arm yourself with as I do think knowledge is power when advocating for yourself.

[miss_marple]

Thanks for your replies. I went to UCH which has an endo centre so I think they must be one of these accredited units? I have had two appointments at gynaecology diagnostics there, both with different people however this second time (which was after monitoring for 7 weeks to see if cysts changed size) the dr got in the head consultant (Mr Jurkovic) to scan me gain. He seemed to spot all sorts on the ultrasound the other doctor hadnt such as scar tissue/lump in my bowel and showing where adhesions were visible elsewhere. He was quite adament that surgery was not the best option and to just keep trying naturally and then visit my GP if I haven't conceived after a year. He said that surgery could damage my ovaries etc and with bowel being involved he was turning a pain free person into potentially someone with new problems. I can see the point but I'd prepared myseld as laporoscopy would be my next step. I did say I had done my reading and that I'd understood I would have better chances of conceived after laporoscopy but he seemed dubious. It's hard not to see that on forums though, lots of people say the laporoscopy was the thing which helped them conceive and gave them a window of opportunity.

I've arranged to meet with my GP in a couple of weeks time and one that specialises in women's health, hopefully we can go through the notes from UCH and I can get some more information. I'd like to find out when I can get a referral to a fertility specialist to get more tests done!

[dawntildusk]

write all your questions down. it helped me before my op to find out exactly what they might/might not do. u dont want to come away with questions still unanswered and dont be worried about bombarding them. good luck with everything x

[miss_marple]

Hi everyone. I met with my GP and she agreed to refer me to an endo specialist so I can get some more advice about my next steps. I picked someone at UCH who is both an endo and fertility specialist. I reckon it will take a few months to get an appointment. She also agreed to start tests in the new year (progesterone, sperm sample etc) so that when it comes to 1 year if we haven't conceived we're ready for a referral to the fertility clinic. I feel a bit better knowing I'm doing something now, though I am quite intrigued why my advice was to leave endometrioma alone and not remove when so many people have them removed. I will def be asking the specialist when I meet with him the reasoning for this.

I have my discharge notes now and I am a bit more clued up about what they found. Nodules in my bowel and recto vaginal septum, obliterated pouch of douglas and the two endometrioma. I can't believe I don't have any pain!? I almost feel guilty about that. xx