Can’t decide

[Lily1986]

I have significant stage 4 endometriosis and adenomyosis for which I’ve had multiple surgeries including two excision and removal of left ovary and both tubes.

Since my last excision I’ve been in pain every day which is now much worse as the disease returns within months of surgery even when excised.

Sadly my specialist left the country so I had a very long wait to be seen at Arrowe Park. I tried to be seen at my local hospital but they advised my case was too severe for them to deal with.

Anyway, finally I had my initial consultation at with the new specialist this week but I’ve been left very anxious and uncertain about what to do

My options are as follows:-

My options are:-

A) carry out another excision but advised because my previous ones haven’t helped it would still return quickly. If I chose this I could delay having the big surgery until my 40’s.

B) total hysterectomy with ovary removal, he’d prefer to leave this as close to the age of 51 as possible as it would highly increase my risk of heart disease, osteoporosis and Alzheimer’s.

Plus the stoma if bowel can’t be saved (i was previously told by old consultant there is nothing left to save as it’s been shaved twice already)

C) hysterectomy and leave remaining ovary to lessen chances of long term health issues but higher chance of quicker reoccurrence. Plus same risk of stoma.

He said whichever I have the disease would likely return so I just don’t see what the point would be.

Obviously the chance of getting a bit of a life back even for a short while is very tempting but the equal chance it could make me worse is frightening.

Sorry for the very long post and thank you for reading it and any advice you can offer.

Lily 💛

[SeventeenNineteen]

Hi Lily

It sounds like you have been through the wringer. I am so sorry.

Especially as your specialist is not in the country anymore and your case is complicated. In this case, I would be asking around to the experts as much as possible. Have you seen ed.ac.uk/centre-reproductiv... the work being done at the University of Edinburgh around antibacterial trials?

Some of the early work looks promising and maybe they might be able to suggest a consultant in your area that might be open to trying a few things before committing to a more radical surgery. All the options they have given you seem like they come with some big consequences that are irreversible, on an uncertain return.

You have been through so much but don't give up and don't accept that there are just a few narrow options open to you. The Edinburgh team looks quite advanced and connected they might have some options to explore. Good luck.

[Lily1986 in reply to SeventeenNineteen]

Thank you for your reply and kind words. This sounds very interesting and definitely something I’d prefer to try before opting for surgery again. I’m going to have a proper read through and contact them asap.

It’s an impossible decision to make regarding surgery, I wouldn’t mind if I’d never had it before but the fact I have and it’s only been of such small benefit and as you also said it’d be irreversible.

Thanks again I really appreciate it and best wishes to you 😊❤️

[Moon_maiden]

Hi

Sorry you’re going through so much. I wish I had a magic wand to improve this wretched disease.

Edinburgh were expanding their testing of the cancer drug as well earlier this year, not quite sure where they are with this.

Have you had an MRI to make sure it’s not something else?

I had pain from gallbladder and when I had appendix out that improved some of the pain.

[Lily1986 in reply to Moon_maiden]

Ah thank you, the Edinburgh trials sound like something I’d definitely prefer to try before surgery.

So sorry you’ve been having so much pain too but pleased the surgery helped with some of it.

I was also worried about my gallbladder when I was last admitted to hospital as I get a lot of pain upper right side just beneath rib cage and also a lot in lower right too. I did have a abdominal CT scan for that which apparently didn’t pick up anything wrong with gallbladder or appendix (although I haven’t seen the actual report) so it was just put down to Endo again.

I had MRI too in October but that was just on my pelvis and showed severe Endo and adeno. The other worry is my lymph nodes in pelvis have been enlarged for about a year now, no one can explain why.

Thanks again I really appreciate you taking time to reply.

Best wishes to you 😊❤️

[Moon_maiden in reply to Lily1986]

That’s good the areas have been checked. My gallbladder showed up on an ultrasound three weeks after surgery for bowel adhesions, so colorectal surgeon missed the chronic gallbladder or didn’t check everywhere for Endo.

Worth pushing for an answer on lymph nodes, maybe a blood test to check for inflammation/infection. Has anyone made any suggestions about the nodes?

[Sunset-lady]

Hi Lily, why do you think a hysterectomy would increase your chances of Alzheimers disease. There doesn't seem to be any concrete evidence to support this. I've read a lot around it as I have Alzheimers in my family and other than women getting more Alzheimers than men and estrogen being a key element to brain health there's nothing else really. You would go on HRT immediately as you'd be in surgical menopause so your brain is protected. If you read XX Brain it explains it very well.

[Lily1986 in reply to Sunset-lady]

Hello. Thank you for the replying and for this info that sounds reassuring and interesting, I will def have a read.

It was the new consultant who told me when I expressed my worry of removing remaining ovary and the effect it would have on my heart as my Dad died of heart failure.

I would try HRT but I have used it before as had chemical menopause twice and didn’t get on very well with it. Also when I had chemical menopause without HRT before last excision my old consultant said it hadn’t worked as much as he’d hoped it would, unsure what exactly he meant by that but was something to do with my insides during the surgery.

I believe some elements of the pain are due to nerve damage and a lot of scar tissue from disease and previous surgeries.

I would likely need another course of it prior to further surgery though.

The most excruciating element of the pain is from the bowel I said that is what I’d like treating as a priority but seems they will try to do all or nothing, I guess because bowel, uterus and bladder are all attached and pulled out of place.

It’s such a hard one. Have you had a hysterectomy? Has it helped?

Thanks again for replying I really appreciate it.

Best wishes to you xx

[Sunset-lady in reply to Lily1986]

They went in to do hysterectomy but my cervix, bowel and left ovary are glued together with endometriosis scar lesions so they don't want to touch it. It annoys me when a consultant just throws around comments like that about Alzheimers when there's no conclusive evidence. Don't let them scare you- do your own reading. Good luck xxx

[Lily1986 in reply to Sunset-lady]

Aw thank you.

That sounds so similar to mine. My cervix, uterus, bowel and bladder all attached too.

What annoyed me most after waiting nearly a year for the appointment they hadn’t even looked or requested my scans from the other hospital. So basically they were dishing out options without even knowing the full extent of my disease. So now more waiting for them to do their own report on my scans.

My previous consultant said further surgery (which would be my final one) was best avoided for as long as possible due to amount of scar tissue.

Best wishes to you xx

[Sunset-lady]

Also Lily why don't they put you on zoladex to shut down your ovary to see where the pain is actually coming from. It's worth investigating. It's very hard particularly when there are bowel issues involved.