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Endometriosis has left me disabled

LoubyLou11LoubyLou11 Member Posts: 10 Listener
Hi, my name's Louise

I'm new to all this so please bare with me. 
Due to many operations for treating severe endometriosis, one of which went considerably wrong and i was left fighting for my life, I've been left with severe nerve damage, many adhesions and it has now rendered me disabled.
Many people are affected by a loved one having endometriosis and it can ruin relationships, family life and careers.
I would love to chat with others who have been affected as I want to write a book and raise awareness.
It could be a relative or partner who has been affected indirectly by it. I'd love it if you stopped by and said hello 😀. Thanks for reading this xx


  • janer1967janer1967 Member Posts: 11,200 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 

    I can't share anything about this but it sounds great you are trying to write this book 
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Thanks, that's great to know 😀 Endometriosis  is a very devastating condition which is extremely common but not talked about. I'm so grateful to be alive because by rights  I should be dead. I believe that I was able to survive to be able to raise awareness and write a book. It's almost as common as the common cold, yet most people don't have a clue about it unless they come into contact with someone who has had or has it.
    I'd love to help anyone who wants to talk about it or get some advice etc......... I guess it's a bit heavy for a friday night chat!
  • Ross_ScopeRoss_Scope Posts: 4,134

    Scope community team

    Hello @LoubyLou11

    Welcome to the community, I hope you are well today. Sorry to read about what you've been through, it sounds awful. Raising awareness is always a great thing, and I wish you the very best with the book.
    Online Community Coordinator

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  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Thanks Ross, it has been a nightmare so if I can offer any help to anyone, I'll help if I can. 😃
  • natz2009natz2009 Member Posts: 48 Connected
    Hi @LoubyLou11 little bit of my story for years been suffering bad periods spotting constantly went to the doctor for bleeding aftet intercorse doctor looked touched my cervix with a swab and was bleeding as soon as she touched it so 2 week cancer referal after a "phone call" i was deemed not to have cancer in my cervix so sent to gynacology for biopsy biopsy came back clear all the while still bad pains bloating and constant bleeding 2 years on im on northisterone and am waiting on an appointment for a hystrascopy and am pooping myself i have said to the doctors for years i think i have endometriosis for 1 reson the pain i get in my left leg when i am due my time of the month it is unberable renders me bed ridden its that bad x just my little story nice to meet you and still unsure whats going on lol x
  • natz2009natz2009 Member Posts: 48 Connected
    I hope u get the help you need and deserve my doctors and hospitals are a joke most of the time its never just a straight answer xxx
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Hi Natz99 you may well have endometriosis but the only way they can definitely find and diagnose it is through a laparoscopy. Have you had one yet? It's where they put a tiny camera through your navel and have a good look. You'd need probably a general anesthetic (that was what was needed in the day, I think it's still the same). It takes about 20 mins 
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Thanks for your best wishes, ditto xx
  • natz2009natz2009 Member Posts: 48 Connected
    Im waiting on a hystrascopy where they put a camera through my cervix and im not in a hurry lol really scared as only seen videos not actually been told about it i think this is so they can rule out a few diffrent things also been told i have ovarian cysts to :S witch i also thought for years also but they could never see due to my bowels (hole other story ) lol so just waiting on my appointment now xx how are you doing xx
  • natz2009natz2009 Member Posts: 48 Connected
    edited July 11
    My sister also said what you said they should do laparoscopy but doctors have never metiond it x
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Please talk to your dr about getting a hysterectomy and if they dont refer you, get a 2nd opinion or ask to see the gynaecologist. Ovarian cysts are also common with endometriosis. It can lead to affecting the bowel, my endometriosis fused all my internal organs together which resulted in laser treatment to free them up. 18 months later, they had to repeat the treatment. My bowel is left covered in scar tissue and scarred. I promise to help you if I can.

     My life is full of pain killers and chronic pain. I try hard to get on with life and I count my blessings lots. I also try to have a good laugh daily and I find that helps 😄
  • natz2009natz2009 Member Posts: 48 Connected
    Thank you and yes also have bowel problems at the minute also been diagnosed with fybromialgia but yeah at my wits end with my doctors and hospitals ive been bleeding now for 4 weeks straight and that on northisarone called gynacology begining of last week still no call back so frustrating sometime wanna just give up with them going on 3 years and still no answers xx i try and stay upbeat but have no friends and anly my dad and ex partner its hard to stay on the brightside xx
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    It certainly is, I'm so sorry to hear that. Are you in a new area? I have chronic fatigue and now I have very painful shooting cramp pains in my legs and hip, I thought it might be fibromyalgia but I'm not sure. The trouble is, you can't physically see a dr unless you're dying! Crazy eh?!
  • natz2009natz2009 Member Posts: 48 Connected
    Yeah i called my gp for 2 resons one i had thrush and 2 my sleep ive not been able to sleep right for years only getting an hour or 3 a night max and the receptionist said we can only do 1 thing and thrush is more important than sleep i just laughed n hung up its a joke n no been in same area now for 12 years it may be the start of it i had pains in my knees from 15 years old was told it was athritis then through the years it was my legs back hips sholders neck arms and feet not able to sleep memory fog forgetfullness unable to concentrate sometimes cant even have a conversation i found my sugar in my fridge last week made me chuckle lol xx
  • LoubyLou11LoubyLou11 Member Posts: 10 Listener
    Bless you. When pregnant, my best mate looked high and low for her hairdryer, that was in the fridge too lol. Yep, sleep is the holy grail....... off to bed now, I hope u get some rest xx
  • natz2009natz2009 Member Posts: 48 Connected
    Lol gd night xx
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