Feeling so Afraid and Confused!

I'm so pleased to have found this wonderful website and to know that there are others feeling just as I do right now. I am so grateful to all the sisters who have responded to my previous posts and already feel that I've made some wonderful new friends! I am scheduled for a TAH (keeping my ovaries) on 1st December, so only 4 weeks to go now!

I have been suffering with prolonged bleeding for the last 5 years or so, and have 'proper' heavy, painful periods on top of the constant bleeding too. I've had several different hormone treatments, Laparoscopies, Hysteroscopies and a D&C, but still the bleeding persists with no let up in sight. I was diagnosed with Endometriosis 5 or 6 years ago now, but my consultant now suspects Adenomyosis too. I have also been suffering terrible lower back pain for the last 10 years or so, and had my coccyx removed 6 years ago as they found it was fractured - but the back pains continued even after the surgery. My surgeon now says that the Adenomyosis could be contributing to these terrible stabbing pains I suffer on a daily basis with no respite at all! Does anyone else have a similar story to tell - I'm so confused and although I know nerves are playing their part in my feelings, I do wonder if I'm doing the right thing? If this surgery could help and give me any kind of improvement where the back pain is concerned, as well as ridding me of this constant bleeding, I'd probably feel better about it all. Although I know there are no other options for me now, this still seems such a huge step. I must add that my consultant is very supportive, kind and patient and goes to great lengths to explain everything and put my mind at ease. He hasn't rushed into this and I know we've tried all there is to try.

I keep thinking that although this bleeding is a nuisance, I don't have the terrible pains in my stomach like some of the sisters I read about, so am I doing the right thing? I am scared - who isn't?! - but I guess I know in my heart that this has to happen. My husband is very supportive and feels this is for the best, and I know he'll support me all the way, thank heavens!

I'd be so happy to hear from any other sisters who may have had similar experiences with a positive outcome. And if there are any other UK sisters scheduled for surgery on 1st December (or thereabouts), perhaps we can give each other the support we all need! Just knowing I'm not alone is a huge help, but the panic attacks and fear I feel in the middle of the night make this pretty hard going! I have no appetite and feel nauseous all the time - not so much butterflies in the tummy, more like elephants!! I'm keeping busy and trying to make sure I get ahead with all my Christmas preparations - I just hope and pray I'll be feeling reasonably OK and able to enjoy the festivities (although we'll be keeping it very low-key this year for obvious reasons!)?! I just want to be able to give my wonderful husband a decent Christmas as a thank you for all he's put up with where I'm concerned! He deserves all that and more.

Thank you for being there and I wish you all the best, whatever stage of the journey you might be in.

Bindi

Hi sweet Bindi,

I just wanted to send you a hug and tell you I understand all the fear and doubts quite well. I had terrible lower back pain before my surgery, but it wasn't all the time, just the two weeks before I was due for my period....my tailbone was hurting me just as bad also. I feel Blessed to say that I've not had any of the lower back pain at all since I had the surgery. During sugery, my surgeon found a cement ball on endo surrounding my bowels and ureters. Maybe thats what was causing my back pain. I don't know, but I'm grateful it's gone now. Hon, I don't know if it's the right decision for you, but I know I kept asking myself the same question, and now, 7 weeks post-op tomorrow, I can say it was the very best decision I could have made for myself and my family. I've no regrets...the worst part of the whole ordeal was the waiting 6 weeks before my surgery. I think our minds are our worst enemies. I prayed a lot and I had a lot of people praying for me...my GP was also sweet enough to see my fear and gave me some anti-anxiety meds to take for the two weeks before my surgery. It helped me out a lot. Can your doctor give you some meds to help ease your nerves a bit and maybe help you sleep better? He sounds kind and caring. Well hon, just wanted to send my love and prayers across the miles....God Bless!


hugs,



Mich

Hello.

I can understand how you feel in many ways. You said, "I'm so confused and although I know nerves are playing their part in my feelings, I do wonder if I'm doing the right thing?" I can relate to that. Also, like you, I do not have the pain that many of the women do on this website. Sometimes I do not have the urgency that they do because 1. I don't have cancer and 2. I'm not in constant pain. I do have pain and it causes be to buckle for a few minutes or sometimes I have a dull ache for all or parts of days. But despite my lack of constant pain, I need to look at the reality...because of PCOS, my body will keep on making cysts. Not all women with PCOS have large cysts but for some reason my body makes them large and I'm tired of the surgeries (one every 2 - 3 years). Each surgery on its own has risks so having a lot of them is not the best. Also, I now have problems with bleeding now and the problems do not respond well to hormones. I have been thinking on and off "Am I just being a big baby???" My doctor did give me the "you're so young" line. However, I asked her the question above. She said "No." She said that each doctor in her practice has had a few patients that they just can't "fix". Patients that do not respond to the regular therapies. She says that I fit into that category. For me, it's mostly about quality of life...BUT, it's also about HEALTH too...I cannot exercise because of bleeding, my body is anemic from blood loss and surgery after surgery is not good either, etc.

About Christmas...like you, I am starting NOW. My surgery date is December 2nd. But be assured, between now and my surgery, this house WILL be decorated, my Christmas cards will be ready for the mail and most of my Christmas shopping will be done. I will have a clean house and clothes and my recovery room will be prepared. There is no reason why we cannot (my hubby and I and our family and yours too) enjoy a wonderful Christmas season. I fully intend to. : ) With they surgery, look at all of the pros and cons...do your research and make an informed decision. Hope it turns out well!! God bless.