Not sure of next steps after recent endometriosis diagnosis

[Sazcoops]

Hi,

I have suffered with heavy periods and pain during sex for years but I was told it was due to fibroids. In December 2020 I had emergency surgery to for a ruptured ovarian cyst. They had to remove my ovary as it was too damaged.

Last October I started getting a dull ache down the left side of stomach and pelvis. Along with spotting and cramps when my bladder and bowel are full. I paid for a private GP appointment and they confirmed after a manual examination that my uterus was enlarged and they reccomended an ultra sound scan. I had the scan done in March and the GP confirmed they found endriomas on my remaining ovary and possible hydrosaphinx?? in my tube.

The pain gradually worse over the weeks and during my scheduled appointment with gynae they admitted me to the day ward and put me on my morphine. At the gynae appointment they said they wouldn't recommend surgery to remove the cyst as there is a risk they would have to remove my remaining ovary. The other options were the pill and an injection to temporarily start the menopause. They discharged me from hospital with a month's supply of the pill and paracetamol for the pain but no follow up plan.

I started doing some research and noted that the advice is to be referred to Endo specialist. I asked the GP for a referral and they have said that they can't do it. All they can do is send a referral to gynae again and they will then triage me.

When i was admitted to hospital, I told the Dr about my bladder/bowel problems aswell and he looked at my surgery notes and said it is noted that my bowel had to be unstuck but nothing further was said.

Sorry for rambling. Just feeling abit lost and worried. Has anyone got any advice on what I should do next? Is the Gp right that I have to go back to gyane again?

Thanks

[NorthernFern]

I can't offer much advice as I'm in a similar situation to you - but I did go private with an endo specialist to discuss. Like you I've had several ultrasounds over the years and last year things got worse so I pushed for a gynae referral. I was referred to general gynae and am still waiting for an outpatient appointment. The specialist I saw privately discussed my endonetriomas and said that usually the presence of these indicates more severe disease. The MRI scan I had confirmed this and whilst it's not horrendous, it's much worse than I was expecting. He's asked me to get gynae to transfer my care to him under the NHS. I tried with my GP when I was first referred to address it to the endo centre but the gynae at the hosp just said I need to be triaged by them first but waiting times are so long I just wasn't sure how long that could take. I'm not suggesting you go privately - but the system seems to be general gynae and triage from there.

I went on the combined pill and for the most part my symptoms are controlled. I do still get quite bad IBS type symptoms though on occasion and have to have a supply of immodium with me - it's very stressful. I know how you feel with the stress and worry - since I got my scan results I've had a rotten few weeks and can't seem to stop crying and can't dig myself out of the hole I am in. I'm so sorry you're in the same position.

Perhaps try and speak to the gynae dept you've asked to be referred to and see what they can do, or how they think you can move forwards with seeing a specialist. A specialist may be able to remove the cysts - they do a lot of it.

[Sazcoops in reply to NorthernFern]

Thank you, I will give the Endo Centre a call and see what they can do

[Sunset-lady]

I'm similar too. I found out after they tried to do a hysterectomy and found it all fused. I have fibroids, a large endometrioma and hydrosalpinx (blood in fallopian tubes). I suffered with pain during sex for years and very heavy periods. I'm on zoladex now which is the injection. I saw an endometriosis specialist privately as the wait time is nearly 12 months and I didn't want to wait. Really worth it because they can put you on a treatment plan. My GP and gynae consultant had me on Provera which was not good for me and he took me straight off it. I hemorrhage all the time without zoladex. It's really really tough. If you are I'm pain go to A&E which could help you to move your endo appointment sooner but if you can, see a consultant privately. You are not alone lovely x ❤️ this is almost identical to me. Xxx

[Sazcoops in reply to Sunset-lady]

Thank you xx