Hi, I'm 32 years old and have just been diagnosed with an endometrioma and, by default, endometriosis. I've not had a very helpful medical journey so far and I'm left feeling really confused, upset and frustrated. Any advice will be gratefully received!
Nearly 5 weeks ago I saw my GP due to what I thought was a stomach bug - sudden onset of upset tummy, vomiting, fever and pain on my right side. My GP sent me straight to A&E with suspected appendicitis. I was admitted and went for an ultrasound on my way to the surgical ward. The ultrasound showed my appendix was fine, but that I had a large (7-8cm, size of an orange) endometrioma on my right ovary which was haemorrhaging. I was then moved to the gyne ward where I stayed for almost a week. I had an MRI scan before I was discharged, with a promise of a repeat ultrasound 2 weeks later and an appointment with the consultant to discuss surgery in 3-4 weeks.
I didn't get any further contact from the hospital. I tried to call to chase it up several times and was passed around outpatients, ultrasound, gyne ward and the consultants secretary. Only after contacting PALS did I get offered further appointments. The repeat ultrasound showed no change in the endometrioma. For my (female) consultant appointment, I had to wait two hours from my appointment time to be seen. Only when I walked into the room I found out I was actually seeing a male Dr who was helping out in the clinic. He wasn't able to tell me anything specific to me and didn't seem to have sight of my ultrasound / MRI scans. I had to explicitly ask if I had endometriosis and was told that I must have to have an endometrioma - I only knew to ask that from the reading I'd done and that was the first time anyone medical had talked to me about endometriosis. The appointment felt a complete waste of time - there was no new information to be had, for him to say I now needed to be referred to an endometriosis team who only meet once a month. He wasn't able to give me any indication of when I would be discussed, next seen or when I would be put on the waiting list for the surgery I need. It seems like I am still months and months away from treatment that I was told on day one I need. He checked with the female consultant I was supposed to see and I can contact the local private hospital and request to be seen by her if I want to go down that route.....
I asked about fertility and my anxiety about having swift treatment so my husband and I can start trying for a baby asap, as we had planned. When I was in hospital initially, all the Drs I spoke to said not to get pregnant before I had the endometrioma removed because if I had further problems with it and required emergency surgery there was an increased risk of miscarriage and complications. My GP also advised that I shouldn't get pregnant until after I had surgery. However, the Dr. I saw instead of the consultant said to go ahead and try due to the potential reduced fertility the endometriosis can cause. If I got pregnant before the surgery they would let me carry on with the pregnancy and not operate. If I wasn't pregnant then they would go ahead. He also indicated that the endometrioma could shrink / clear itself up if I got pregnant.
I don't know what to do for the best. I don't want to put my life on hold for an indefinite period of time waiting around for surgery but also I don't want to put a baby or myself at risk by getting pregnant whilst I still have this endometrioma. Has anyone got any advice or experience of pregnancy whilst having an endometrioma?