Advice please - Endo/Adenomyosis/Cyst

[Purple10000]

Hi, I had an ultrasound last week and have been told I have:

Adenomyosis

Adnexal cyst (69mm) on my right ovary

Deep infiltrating endometriosis

My right and left ovary are joined together (Assuming this is due to endo)

Bilobed cyst in porch of Douglas - 39mm

Subject to MRI the consultant said Hysterectomy would be the way forward. I'm feeling extremely nervous about having such a big operation and would like to know about any other options, can anyone help me with this please?

In terms of symptoms - Heavy periods (Change pad 3hrly when heaviest flow), bloating and an admission to A&E last month for excruciating pain around belly button, vommiting, sweating - not relieved by morphine or codine, diclofenac pessary helped in the end.

Would greatly appreciate anyone with advice on this situation

[Purple10000]

bump

[ciaotuffy]

Hi Purple10000,Sorry to hear about your situation. Trip to A&E for extreme pain is no fun. Not sure if I can help but just sharing my "story" I had my first lap to remove endometrioma on ovary, remove tubes, uterine ablation to help with heavy bleeding but kept ovaries(as much as possible), remove severe endo. 5 mths after that lap, I had severe pain, throwing up on the floor, can't stand up type pain that maybe you're familiar with, and ended up in emergency where they did an ultrasound and found 5mm endometrioma had grown back. I was devastated that endo would grow back so soon. I didn't have any hormone treatments due to previous breast cancer. They said that they typically do mirena, pill or lupron to help prevent endo from coming back.

So at 49 years old, I faced the decision of whether to have a full hysterectomy with ovaries removed or just excise endo again and try to preserve my organs again. Given my age and since I didn't want to go through yet another surgery, I decided on the full hysterectomy. I was terrified of the side effects and going into menopause, but I'm 10 months post hysterectomy and feel pretty good. Sometimes I'll get little pains but nothing near the previous endo pains. And the menopause symptoms have been manageable and since I would be near natural menopause anyway, it's probably ok and was the right choice for me.

You probably want to think about your age and how far you are from menopause if you'd consider a hysterectomy or ovaries removed even. Or you can try just excision to see how that goes for you and/or the pill/hormone options or the lupron/zoladex options that put you into chemical menopause. They might want to try something less invasive first. Every body is different and people respond differently to treatments. Maybe you'd be lucky with excision that it doesn't grow back. I was one of the unlucky ones where my dr said, sometimes the cysts just grow quickly for some people.

Happy to share more info/answer questions if you need.

Good luck with your decision and journey.

[Purple10000 in reply to ciaotuffy]

Thank you so much for your reply, very helpful indeed. I'll be 44 in August, I think if I was around 49 I would feel better about having a hysterectomy...my mum went into natural meno at 55.

Your post gives me hope, as my main concern is how I'll be post operation, may I ask did you go on hrt? Personally I don't really want to as I've already had 4 rounds of ivf. Also had a diverted septum so had surgery on that too, 3 stuck placentas and a termination for medical reasons.

I think the ivf drugs/surgery have probably caused some of the issues that I have. Struggling to get my head around it all if I'm honest. Not wanting more hormones etc seems to point towards hysterectomy I think.

Look forward to hearing from you and thank you again for taking time out to reply, much appreciated 😊

[ciaotuffy in reply to Purple10000]

It sounds like you've been through a lot already so I understand why you wouldn't want more hormones. No I didn't have HRT after my hysterectomy due to prior breast cancer. I was really scared of the side effects of the medical menopause, but so far 10 months out it's been manageable. I had the night sweats, hot flashes, probably mood swings. But everything was ok, it wasn't so bad and still way better to me than the alternative of living in endo pain and heavy bleeding every month. And I was worried about having the endo return soon if I added back hormones- I'm trying to remove the hormones and cause of endo with the surgery. Hope you get it all sorted out.