End of my rope

[malsmarie]

Hi ladies ; i am coming to the end of my hope rope and just have no idea what to do here.

i was diagnosed with Endo in 2022, spread to my colon, bowel, large and small intestine. Had a partial hysterectomy where they remove my left tube and ovary because it was so overcome by adhesions that it was causing internal bleeding.

have had 2 laperectomys since to remove golfball-grapefruit sized cysts. they grow back bigger and faster each time.

My ob here in the US is starting to talk full radical hysterectomy , but i’m 23 years old and want to carry my own children desperately.

ever since diagnosis, i have also been admitted to a psych ward for panic attacks related to pain… last night was spent in the ER because a cyst ruptured and it felt like every bone in my hip shattered all at once.

i dont know if i can handle this anymore. do i just say screw it and get a hysterectomy so i wont be in blinding pain everyday for the rest of my life? freeze my eggs?

or try a new doctor, maybe go to the center in UK, idk i’m drawing for straws.

[Purplebex]

Hi,

I’m so sorry to hear you are going through so much! It’s very difficult being in that amount of pain, have you heard of Nancy’s nook page on FB? It might be helpful for you over there in the US x

[malsmarie in reply to Purplebex]

i have yes, the page was very overwhelming for me since it seemed to mostly aim at helping people find excision surgeons.

[Stomacron]

I’m no expert in this, not a doctor just someone who has been through something similar although I did get pregnant and had a baby before the hysterectomy. Is it possible for you to freeze your eggs and then have your remaining ovary removed? It would mean fertility treatment when you wanted to have children but you would still have your womb. I’m not sure this is possible but maybe worth asking the question.

[malsmarie in reply to Stomacron]

its a question i have brought up many times but it gets shut down pretty quickly because of the astronomical prices of doing so here in the US.

[LME5]

i'm sorry about the severity of your condition. have you made any lifestyle/diet changes? are you on any pharmaceutical medication?

[malsmarie in reply to LME5]

yes, after my diagnosis my lifestyle changed completely. diet wise, i cut out all dairy and gluten in hopes that it would help the inflammation , and found that the alternatives made my stomach worse.

I am currently taking progesterone and menagrin to attempt to stop my constant bleeding. i also am on pain meds because i have been bed ridden for over a week now with such pain.

[LME5 in reply to malsmarie]

Cutting out or reducing gluten & dairy are helpful first steps. Research shows that adopting an anti-inflammatory diet also helps. However, the AIP diet (Anti-inflammatory Protocol) is very restrictive. If it proves too difficult, I would focus on cutting out what you can with regards to inflammatory foods. Supplements like omega 3 fish oils, curcumin, zinc and B complex vitamins also help with inflammation. I have found magnesium, especially magnesium malate to help with pain management.

Medically wise, a hysterectomy is not a proven method of managing pain. As you're experiencing yourself with a partial hysterectomy, the pain continues & sometimes worsens. Please don't feel pressured into having everything removed. Endo laparoscopy wise, as you've probably heard, excision surgery is the best form of treatment. However, only if performed by a competent, experienced surgeon together with other specialists should other organs be involved (e.g. colorectal or thoracic). Even then some women continue to experience pain, albeit reduced pain. Remember, the best surgery is not the cure & our lifestyle has a huge impact. Everything from childhood trauma to diet & exercise to stress levels will affect your condition.

I hope that helps in some way.