Endometriosis management and pregnancy

[Loubzz]

I've just been diagnosed with endometriosis and an endometrioma on one ovary.

I'm feeling a bit fragile, worried and lost with it all. I'm 24 and wouldn't have kids for a couple more years yet. I've been told to go on the pill back to back for three months then have a period, or go on the mirena until I want kids then stop and resume.

Has anyone any experience with this? Do I need to request a follow up to monitor the cyst I have? Does anyone have any encouraging stories of this and getting pregnant? I'm really feeling it to be honest I know it's not the end of the world but I'm scared of different possibilities. Does anyone have any experience of suffering with endometriosis then it clearing up after pregnancy?

I've seen a lot of articles linking endometrioma and ovarian cancer, do I need to monitor?

Any and all responses would be appreciated, feeling fragile at the moment

I had surgical treatment of endometriosis, and went on the pill back to back until I was ready to TTC. We started trying about 2 years later and I got pregnant first cycle, much to the surprise of everyone. Had an uncomplicated pregnancy, although I did seem to have quite extreme ligament pain, but I was told that's because I likely had scar tissue on my ligaments.

After pregnancy, things were great for a while, I was having no periods due to breastfeeding. Pelvic pain started creeping back in, told it's likely the endometriosis has started to grow back. Told the consultant we were hoping to try for a second baby soon, so they recommended TTC for 6 months and if no luck they will got straight down surgical route. Surprisingly fell pregnant first cycle again. We sadly lost then baby and then fell pregnant in the first cycle yet again. Endometriosis doesn't necessarily have an impact on fertility.

As for follow ups, I think it depends on the size of the endometrioma. If not too bad they may just recommend you monitor for worsening of symotoms. Not sure about links with cancer, but of course it's a good idea for all women to be aware of symotoms and seek medical advice if need be

Congratulations on getting pregnant and I'm sorry for your loss.

How long do you think you had it before diagnosis and do you know what stage you're classed as? Do you have a plan long term to stay on the pill, or try the coil?

Do you have much pain or symptoms when you're on the pill back to back? I was recommended three packs back to back then a week break, is that what you do?

Sorry for so many questions!

Hi Loubzz,

I'm not sure how helpful I can be as I haven't started ttc yet (although I too have found the thought anxiety prevocing we aim to start in June) but I have had enough experience with endometriosis management.

I haven't had an endometrioma but had a large cyst which was monitored with ultrasound and would be operated on of it became a problem. I had symptoms of endometriosis from age 13-28 before finally being listened to. I had a mirena inserted to try medical management of pain etc then 6 months later was listed for laparoscopy as pain and other symptoms were worsening. My surgeon told me on the day they didn't expect to find anything - 4 hours later I woke up following extensive excision surgery for severe endometriosis.

I've left my mirena in until I'm ready to ttc to try and slow the growth but a couple of years post surgery and unfortunately getting more symptoms.

Check out if there are any local support groups as our hospital hosts an Endometriosis UK group supported by the specialist nurse, maybe they can help answer more questions/worries?

I'm happy to answer what I'm able. Take care of yourself.

Hi
I was diagnosed with endometriosis 14 years ago I also had cysts on my ovaries. The cysts were just monitored. The endometriosis they told me to get pregnant as it would help. I had the depo jab and the coil. We then decided to try for a baby and it was 8 months of bliss no periods. My little girl is almost 2 and the periods came back in April this year. I am on for 7 days 4 days break and then 7 days on again. I am going to push for a referral back to gynecological care as even though I want another baby right now I am so drained and in agony I don't even have the ability to try and conceive. I'm hoping that in 14 years the understanding of the condition has improved

Hi

I was very fortunate and got pregnant within the first few months of TTC. I was not diagnosed with endo at the time, but had very heavy painful periods for years, and they noticed cysts in my pregnancy ultrasounds.

Ended up having burst cysts which finally required an emergency c-section at 35 weeks when my water broke. That's when I was diagnosed with severe endo.

Since then, I've had further endo issues. However, it didn't affect my TTC which was particularly fortunate for me. Hope all goes well for you too.