endo is taking my life away

[kimee]

Im not really used to writing on these sort of things but i am so desperate and so depressed it is worth trying! Reading other peoples stories in here i am so comforted to see i am not alone in being trapped in a life with this disease that noone seems to understand, but also sad to see how many other people are going through the same hell. I am 30 and have a long history of bad periods and period pain it took me 10 years to be diagnosed with endo. I have tried numerous pain killers, and contraceptive pills nothing works.I have a daughter who is now 6 years old and even throughout the pregnancy i suffered with pain and over the last 6 years it has got worse and worse. I was put on a course of zoladex injections and finally for the first time in my life ( since periods began) i was pain free!! The side affects were not nice hot flushes etc but anything was better than the pain.The doctors then said zoladex can only be used tenporarily because of the affects it may have on the bones, so what was the point in me finally finding a cure to then be told i couldnt have it??About 3 months ago i had the laparoscopy with laser treatment and it has not done a thing. The pain is back with avengance.i told the hospital this and after years of going back and forth they have said there is nothing else they can do for me and discharged me for good. For 2 weeks of every month the pain wakes me all through the night i feel like my left ovary is on fire, it spreads to my hip and down my leg.I cant stand or walk. At this moment i am in the 2 weeks of pain and i cant cope anymore. im not sleeping, the pain is draining me, i just lay in bed exhausted and derpressed. The thought that this is it, this is my life, is unbearable. Im sorry this is not an uplifting story full of advice.But it is my story, my truth about my life with endo, the disease that noone seems to take seriously, the disease that noone can cure and the disease that is taking my life away. x

[anneliese]

I feel your pain , I really do . It is so frustrating the way professionals seem to treat endometriosis, it's as if we are just suffering from a bit mild period pain- far from it!It is just terrible that you were turned away and told they could do nothing for you - health professionals should never give up on people- it's their job to help people like us. It is great that you are telling your story because you should never keep to yourself what has happened to you. However we need to fight endo and not let it take anymore away from us. You have been through so much and you are so much stronger than you are giving yourself credit for : )Stay strong!x

[charms in reply to anneliese]

Hi Annaliese,

I really feel for you and your situation. I cannot believe they have just given up on you! Have you been referred to a pain clinic before? They may be able to juggle your medication around and they are supposedely, the experts.

After many many years of experiencing this awful pain, my gynae prescribed me Prostap injections, which are practically the same as zoladex. She also put me on add back therapy, Climavale (hrt) so that I can stay on it for much longer, and it stops the side effects, so no hot flushes. I need to have bone scans occasionally, as the injections can affect your bone density, but apart from that I have now been on the injections for nearly 18 months.

I take the odd break in between for about 2 - 3 months, just because I want to give my body a break, but then the pain becomes unbearable again, so then I resume my treatment. I still have bowel pain, which the injections can do nothing for, so when it hits I have to take morphine. It's not ideal, but it's my life and I have to try and make the best of it.

Maybe you could discuss something like this with your gynae, and see what they say? It might not be for you, but then again it may be.

I also have a 6yr old daughter, whom I am so blessed to have, and I need to be on my toes constantly, just to keep up with her. Being in such pain when you have children, is no joke. It's so awful, as you just want to do everything for them and with them. When the pain is bad, she is what keeps me going.

I really hope you find something that helps to make things a little easier for you. 2 weeks of pain is too much for anyone.

Take care and try and stay strong. I know you will find a lot of support on here, from all of us endo girls. xxx

[Zolta]

Hi Kimee,

I know what you mean when you say your ovary feels like its on fire! After numerous visits to the GP last year complaining about pain, he finally referred me to have an US scan, which confirmed a 2.5cm endometrioma in my one remaining ovary. Over 4 months I had 3 more US scans, along with an MRI, and it showed the cyst increased to 5.5cm. Whilst waiting on a 5 month waiting list for my laparoscopy in May to drain the cyst I had to go to A&E 4 times over the course of 4 months, as it ruptured and twisted my ovary a few days before I expected my period. What I learned from this was to PLEASE do NOT put up with the pain! Prostap did the trick for curing my pain (but had dreadful hot flushes throughout summer), I am now trying for a baby and now in cycle 3 but my pain, I fear, is slowly returning and I sometimes get so bloated I look 5 months pregnant! I urge you to visit your GP, my symptoms of the fire like pain in my ovary and hip was the endometrial tissue growing inside of it. Ask for an Ultra-Sound scan or MRI to make sure your ovarys are not being invaded by this disease.

Zolta x

[JEWELS]

Hi... Sorry you are suffering... It's all to common the docs really don't know how to treat us I'm afraid..

Have you ever tried amitripyline is great for helping you sleep and does help with the pain if you can get the dose right.

Or even acupuncture altho I know many people can't afford this.

Pain clinic should be able to help you...

Or treatment from a consultant who specialises in endo excision,not laser treatment is key. Best of luck xx

[Gillian19]

Hi Kimee,

I feel for you but the hospital shouldn't have discharged you for good. You need help. I am almost 42 and I was first diagnosed with endo 6 years ago after suffering from an ectopic pregnancy and almost losing my life because of it.

I have always had painful heavy periods from I was 15 and after years of different pills, at the age of 28, I asked my GP if I had endo. He said no I wouldn't have it at my age, so I thought he's the Dr, he know's what he's talking about. After coming off all my meds for my periods, we started trying for a baby and was overjoyed when I fell pregnant after a year had passed. This was shortlived when at 6wks I lost a set of twins, they said, one in the uterus and the other in the tube. The sad thing was they didn't realise there was one in the tube til it burst and I'd nearly died, thankfully the Dr on call was called up to the ward and knew what the problem was straight away and rushed me to theater. My husband and night staff thought I wouldn't make it.

I'm a strong believer that things happen for a reason and that reason was for them to diagnose me with endo and get proper treatment for it which included lazor treatment and a laporascopy to remove my left ovary. This allowed me to have a normal pregnancy the year after with a healthy baby boy who is 5 now. For the first time in my adult life my periods were pain free and less heavy and I felt great.

Sadly after my sons 3rd birthday the pain and heavy periods came back worse than ever. For only one week of the month I was pain free and normal, the rest of the month I was in pain and very very moody, shouting and yelling at my son and husband for the least wee thing.

After more miscarrages and more severe pain and fainting with the pain I went to see another gynae Dr and he suggested a hysterectomy. That was the hardest thing for me to hear, I still wanted to keep trying but my son got upset everytime I was fainting that last Christmas I made the decision to have a hysterectomy. In Feb of this year 2011 I had a subtotal hysterectomy which means I still have my cervix because the endo is too severe and has attached it someway to my bowel. The Dr said I would need more surgery to repare the bowel and remove the cervix because I'll get more pain but as yet I have no pain at all.

The hysterectomy was a success, I feel, because I'm drug free, pain free and most wonderful of all, I have no period and I now have a life.

Every woman is different but it's an option you might someday have to think about, it worked for me and my family, even my sex life has improved with my husband.

I wish you well for what ever you face and pray you will get the medical help you so desperately need. God bless. Gillian x