Living with Endo...

[FMcB79]

Hi everyone - feeling very confused and down, so hoping you can share some thoughts with me...

I'm struggling with endo - have been for about 8 years - had my first lap a week ago, with endo specialist, and still feeling very sore. They found cysts on my left ovary, and recto-vaginal endo, and everything all stuck together - can't remember where else they said now. They drained the cyst, but didn't do much else as they were pretty sure it would need a bowel resection. I'm completely phobic about needles and operations, I was in such a panic before they put me under the general they nearly cancelled the whole thing. I know it's ridiculous, but I can't seem to control it - I have these awful panic attacks which I think are more about loss of control than anything else!

I've said that i want a break before even considering a second op - I've been on Zoladex for 5 months waiting, and they wanted me to go straight on with it. I want to give my body a break and see where I am, but the more I think about going through all that again, with all the complications that bowel surgery entails, the more I think I don't want to do it. (Plus the horror of a possible temporary stoma - I nearly fainted just seeing my stitches when I changed the dressings yesterday! This phobia is so stupid)

What I'm trying to get to grips with is the fact that my endo isn't going to be cured is it? Whether I have this second op or not, I'm still going to have to live with it. You've all been through so much, do you think all the ops have helped, and surgery is the right way to go? Or is controlling it through diet, supplements and lifestyle just as important? I'd be so grateful for any thoughts on living with this horrible disease, I keep getting so down about it and bursting into tears (poor hubby is putting up with a lot) hearing any stories would be truly helpful.

Thank you for reading

Xx

[Hidden]

Hi FMcB79,

I can really understand where you are coming from as I am going through the same just now. I got diagnosed with Endometriosis yesterday and they operated on me for over 2 hrs! I have been in a lot of pain for 14 years and have suffered from infertility for 2 years.

This disease makes a lot of women go through a lot of pain and agony. Not to mention the possible infertility. Yes it is true that Endo will always come back. Often within 6-12 months after surgery. And every surgery creates more scarring. My sister has Endo stage 4 and she had it for over 25 years!!

She decided against more operations in the end but they operated 20 times over the last 25 years.

I only went ahead with this operation to finally get a diagnosis and to get some Endo removed. I am also not sure if I want to go through another one soon. I am in a lot of pain just now and had to take this week off work.

I will try to control it with diet & lifestyle changes and some supplements as its meant to help a lot. I used to work for a woman who has struggled with Endo for many years. They told her that she will never have children. Well she changed her diet a lot, took Wellwoman and exercised and with that she felt great for the first time in years. Not long after that she fell pregnant with her first child. She now has 3 children and looks and looks and feels good

I want to give that a go xx

[emilylb in reply to Hidden]

I notice this is from a while ago, but Im currently waiting for lap at end of feb but in 2 minds whether to have it as i currently feel that my symptoms are manageable and worried any kind of surgery could make things worse... did you find this to be the case? did surgery help or hinder? any advise would very much be apreciated I feel so lost and scared, I really dont know what to do for the best! I hope your doing much better now xxx

[FMcB79]

Thank you so much for your reply - I'm sorry that you are going through such a difficult time too. It is so great to hear of someone who managed to get on with life and not let this take over - it feels very daunting just now! Thank you so much for sharing that.

I seem to be spending hours scanning the internet for alternative things to help, so many "wonder foods" around, but I am a bit of a cynic I'm afraid, if things seem too good to true then in my book they usually are!

Definitely going back on the endo diet though, I think that does make a difference.

Good luck and hope you feel a bit better soon xx

[Looplou]

I have had a big excision recently after zoladex and hormones treatments hadn't managed to help with the pain. I am still in pain now but they are really hopeful it will improve as it can take a long time for your body to heal after the op. I had the bowel surgeons present as it was on my rectum and on my bowel in other places, was told there was a chance of a stoma but that wasn't the case thankfully. They were really brilliant, all keyhole and home the next day. My tubes were cut because they were so damaged and too stuck to remove, apparently if they are blocked and left in then it can reduce the chances of ivf working. I had lots of scar tissue, they won't touch my tummy again because of that, so that was last chance. I had a lap 18 months before at my local hospital and unfortunately I received no treatment after that. In those 18 months it spread to my bowel. They are hoping that my pain levels will be better and I will cope better if I do decide to have ivf. I would say discuss it again with them, write a list of the pros and cons, and make sure you know if the op can possibly benefit you fertility wise. Wishing you all the best luck xx