There is hope!: Hi all, I wanted to share... - Endometriosis UK

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There is hope!

Charlie21 profile image
6 Replies

Hi all, I wanted to share my story and tell you all that there is hope! From the age of 12 when my periods started they were always very heavy and painful, and that's how my whole life with periods continued and I simply thought " I'm a woman and this is how life is!" But the last 7 years have been a living hell!!! Foolishly I wouldn't go to the doctors because of the above statement!!!! Until it really did start to wear me down physically and mentally. My husband finally managed to persuade me to get checked out and I'm so glad he did! Initially my FEMALE doctor referred me to the hospital ( she was unhelpful, useless and made me feel like it was all made up!) after an initial scan which discovered I had a large amount and very large fibroids ( for a woman my age I was told) they decided to perform a laparoscopy and do the procedure of removing the lining of my womb! ( I refused the coil as I just didn't want it, can't explain why just didn't!) this all frightened me as I have a huge phobia of needles!!!! Both went well but I was kept in overnight as the gas got trapped in my shoulder and my recovery wasn't straight forward. I was diagnosed with endeo and told I was to have a 6 month course of zolidax injections in my stomach!!! My periods stopped and I thought great! But I suffered side effects I wasn't expecting!! Lots of weight gain, depression and loss of sex drive. But at least I was pain free for the first time in years, or so I thought! My periods returned , with a vengeance which my gaenacolgist was surprised at! He was ok, but seemed so relaxed about it all and kind of what do you want me to try now !!!! Luckily he was off sick and I saw another who has been my saviour! He was open and honest with me and explained everything even though it was hard to comprehend at times! I had a severe case of endeo and if left would get far worse! I was put on the pill temporarily which only helped for a short while.after many meetings we decide a hysterectomy was the only way forward as my fibroids had grown rapidly, the endeo was severe ( at one point they thought it was attacking my kidneys and bowel but luckily they got to it in time!) and I had polysystic ovaries. The surgery took 4 1/2 hours and they got rid of the endeo, removed my womb, cervix and tubes and repaired and saved my ovaries which as they were fused to the wall inside were amazed they could.i was very poorly as I lost a lot of blood, iron levels and blood pressure dropped drastically but had wonderful care in the hospital and 6 days after surgery came home. I turned 37 the week after my surgery, I'm lucky I have 2 wonderful teenagers and so glad I had them young but more importantly have a patient and amazing husband who I couldn't have done this without. It's 13 weeks now since my surgery and I feel on top of the world!!! I have never felt better!! Finally I can say I'm pain free! Everyone is different, so I hope no one worries reading this as our bodies all work differently and each individual is different and what works for one may not work for another, but for me this was the best action.thanks for reading and I hope you all get the much needed help as people tend to think its not a big deal, but if they had it and went through what we have all been through, maybe they would be a bit more understanding xxxx

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Charlie21
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6 Replies
Sunflower846 profile image
Sunflower846

Hello you have been through the mills havent you! How is everything wiht ur endo now? Thats great u have kids and a lovely husband. I am 31 just got treated for severe endo stage 4 and have no boyfriend so i am now freaking a bit as it seems it is difficult after stage 4 to get pregnant, docs wont be to honest so suppose will have to wait and see. I am also on a temp menopause and wow side effects are awful and only been on it a week, also taking hrt livial so hoping all this calms down eventually. xx

Charlie21 profile image
Charlie21 in reply toSunflower846

Hi lynnie846 , so far so good with everything! Like I said I'm only week 13/14 after my operation but feel fantastic and my surgeon is very confident he has got rid of all my endeo.ive never been pain free before so this is bliss to me!!! I hope all goes well for you, sounds like your having it rough to Hun xxxxxbut stay positive and don't give up xxxxx

Sunflower846 profile image
Sunflower846 in reply toCharlie21

It's so nice to hear a good outcome :) really pleased for u. X u know its when my moods are up in down its making mr feel depressed and worry about everything and can't talk to anyone as they don't get it. Thanks for the message that was really nice. Xx

vicner profile image
vicner

Hiya Charlie21,

Thank you so much for posting your story, I am glad that your feeling so much better now. I am currently waiting for hysterectomy and cant wait to have this horrible part of my life over so that i can start again pain free. As you say there is light! xx

Charlie21 profile image
Charlie21 in reply tovicner

Hi vicner, your welcome, I thought it was about time I wrote it done somewhere it may help others!! Good luck with your hysterectomy , the first 6 weeks aren't fantastic , but after that you feel soooo much better xxxxxxxx and yes, pain free!!! Lol xxxx

Charlie21 profile image
Charlie21

Hi all just wanted to give a quick update since my op 6 months ago, I feel bloody fantastic!!!! I have had ups and downs but now this far in am relieved I am pain free,,, at last!!!! How are you both ? Vicner and lynnie846 ? Xxxxx

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