Plan of action?

Hello ladies. Have not wrote a post for some time now! I was diagnosed with grade4 severe endo/ Adno about four years ago. Long story short I had some other stuff going on with cancer on my head and could deal with the to. I was told to have coil or mini pill to stop my periods. Last year I decided to try the pill again but I never got on with it years ago and it made feel very low and brain fog also I never stopped bleeding which made me so tired? I’m 45 and my cycle is all over the place since I had part of my ovary removed 2 years ago , I always miss 1 or 2 periods which makes me feel so ill , I have a nogule on my Bowel 5 cm ? Maybe now bigger as I’ve not had it looked at in a year. I need to do something as I’m sure it’s not good to leave it to get worse! Or can I leave it and put up with my symptoms to my menopause? Or shall I try the marina coil ( very worried it will make things worse)hope I can get some advice for you all.

Sam

[Starry]

Hey. First off I am so sorry you have had such a massive amount to deal with.

I take it you are being seen under a BSGE centre given the size of your nodule?

I had a 3.5cm RV nodule found. I tried the coil first. It did stop my periods ( after a 6 week non stop bleed) which was bliss but I did develop low mood and suffered daily mild pelvic pain. After 5 months I took it out and a week later I was fine.

I then tried zoladex which was disastrous for me so I felt ran out of non surgical options, though the Consultant would.have ( reluctantly) put me on close monitoring if I did do the op. I decided to as my symptoms were worsening considerably.

When they operated my vagina was badly damaged and needed a major repair and I had the deepest bowel shave possible while avoiding a bowel resection which I was warned was a risk.

I'm glad I had the op now rather delay longer ( 9 mo the after diagnosis) as reckon six months later it would probably have been a resection. But it has been far from easy. At 9 weeks My direct Endo symptoms are much better (brain fog, chronic fatigue, bladder , bowel movements) but I am still experiencing significant indirect effects of having surgery ( viral meningitis initially post surgery , coxxyx nerve pain and now gastric and esophagus issues). I've yet to attempt sex. Overall it was the right think I hope.

Your nodule is bigger and placement likely to be different. Consultant needs to give you the odds on resection risk to help you weigh up the decision as every case is unique. Perhaps some ladies with experience of resection will comment on their own experience.

One other consideration is that some small studies have shown that Deep RV Endo nodules may be hormone treatment resistant in some stages of their development so there is a degree of uncertainty how much difference they make for this type of endo.

[Hidden in reply to Starry]

Thanks for your reply

I am being seen at a BSGE centre. They Said I need to stop my periods the other option would be to put me into fause menopause as they need to probably operate on the bowel and I’ll have a colostomy bag for 6 months while it heals ? the endometriosis was so bad that they couldn’t start to remove any it was too complicated. She said my insides were Blitzrated Everything was all twisted and stuck. I feel like would it be easier to live with my symptoms but I’m just concerned that in years to come will all catch up with me ? X

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[Starry in reply to Hidden]

Sounds like you have frozen pelvis which is the advanced end stage of the disease.

It really depends if your vital organs are under threat. Have you discussed the non surgical route with your consultant? What did they say?

Chemical menopause is induced using zoladex or decapeptyl it carries all the side effects of real menopause so it's quite hard core. You can normally only have 6 months treatment at a time as it reduces bone density. Symptoms will return after you stop it.

[Hidden]

I’ve got an appointment on Monday with a different specialist so maybe I’ll get some more options. Thank you for your advice x