Yesterday

[Denandnelly87]

I have been having scans for a cyst for 18 months, I am 53, it was scheduled to be removed yesterday, however I woke up to being told a Mirena coil had been fitted, they had removed a polyp and done some cautery. They discovered stage 4 endometriosis, I have been told the cyst is attached to my bowel and it is going to be major surgery to get to it with the risk of a colostomy, the other option I have is too be given injections to put me straight into the menopause. Actually don't fancy any of it! Head is in a pickle, any advice gratefully received. I was also told might need the surgery in 5 years time because the cyst might grow, as far as they are aware it's a chocolate cyst and there is a smaller one there as well x

[JeanOsborne]

With stage 4 endo you need to be referred to a BSGE centre. A general gynaecologist is not qualified to deal with this. This is NHS guidelines.

Please get that referral .

[Denandnelly87 in reply to JeanOsborne]

Ok jean thank you I will look into that x

[Heloo85]

The risk of colostomy is very low, they have to tell you that just incase. My fallopian was wrapped around my colon with my ovary and endometrioma stuck behind it. Didnt get a colostomy. I have stage 4 DIE and no hormonal therapy has helped. Although currently on my second course of Zoladex. Had the surgery in December. Endo come straight back. But it doesnt always. When bowel is involved it could become dangerous. The surgery, although major, wasnt too bad. But ultimately its up to you! Good luck.

[Denandnelly87 in reply to Heloo85]

Thank you, so sorry to hear yours has come straight back, how is the Zoladex treatment, one of the things that puts me off that is my weight ballooning, I've got an under active thyroid as well so don't really relish ballooning weight as I know how depressed this would make me

[Heloo85 in reply to Denandnelly87]

I cant say ive noticed any weight gain, but i was underweight after my surgery and now in a normal weight range. You can stop them if you dont get on with it. Last year i did 4 months and this year only got a 3 months course. You can only really have 6 months total. You could however try the pill back to back, although im not sure that will help with the endometrioma ie shrink it, but it will stop it from growing.

[Denandnelly87 in reply to Heloo85]

Thank you so much for replying, really grateful, there is just so much to think about and I know I wouldn't get this kind of information/ support from the medical staff. Really appreciate it x

[Heloo85 in reply to Denandnelly87]

Its just unfortunate that theres no cure or better treatment options. Your best option is surgery though, especially with bowel involvment. Because i was left so long with a chronic subacute obstruction (my fallopian tube, which was also full of fluid) i now suffer from chronic constipation and impactions. I wish id seeked diagnosis years ago when i used to wake up in night for no rhyme or reason, roll around, pass out, throw up. But i never had any normal endo symptoms and that could happen anytime of the month. I left it 6 years until it turned into PID from a ruptured endometrioma. Its unlikely my bowel function will ever be normal. Id say definitely treat it! Dont end up like me! Xx

[Denandnelly87 in reply to Heloo85]

Ok thank you, now I know where I'm up too and reflecting back on what has been happening to me, I've been suffering with nausea, upset tummy prior to period and then constipation at times, I just thought it was peri-menopausal and normal and I've been diagnosed with irritable bowel, so I'm feeling this isn't something I want to watch and wait and then end up in an emergency situation! Xxx

[Heloo85 in reply to Denandnelly87]

No you dont. I was very similar. I was diagnosed with IBS at 17. I got on with life. It then progressed to that which i told. Id be awaken in night in agony, sweating, rolling, passing out, throwing up. Always early hours of the morning. In so much pain i couldnt even phone an ambulance. Next morning i would stand up, feel a huge tug that would put me on my knees then id be fine. I had a very busy lifestyle. I looked after my disabled dad, had a horse. I was on the go 24/7 so i ignored it! It would happen a couple of times a year! I probably shouldve seen a Dr, in fact my Dr went mad when they found out .. I had unexplained weight loss too. My normal weight is 7st 5. But i went down to 6st 13 and could never budge. It all makes sense as to why now, but I should never have left it. You will be the same. Unfortunately it does just progress without treatment in most cases. Sometimes it doesnt, but i wouldnt take the risk. Xx

[Fabbird]

Hi, I wonder how far you are off a natural menopause? If you know what age your mother had hers, that's a good guide.

I also have adhesions on the bowel with lots of the same symptoms but as I'm now 50 and peri-menopausal I agreed with my specialist to stick with the Mirena until I'm through the menopause, then consider surgery. I really don't fancy Zoladex and he thinks it's a reasonable plan. The only question is whether I can put up with it that long, but I'm going to try.

So I wonder if that strategy might be open to you?

[Denandnelly87 in reply to Fabbird]

Thank you, my mum was through her menopause at my age, I'm 53 now, 54 in September, my periods have always been awkward buggers until my late 40's early 50's and now they don't want to blinkin stop! I'm sure I'm peri-menopausal though I get hot Ro's and night sweats grumpy and tired lol so as far as I am aware they are all signs! The only thing I'm concerned about watching and waiting is I don't want to retire and face surgery I've worked hard for my retirement and want to be fit and ready for it. What a dilemma!

Thank you everyone for the support it really does mean a lot x