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jenn11

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  • "jenn11" started this thread

Posts: 20

Reg: Jul 22nd 2011

Location: carlisle

Children: i have three children 1 is my daughter and i have a step son and step daughter 3, 6, 9

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Saturday, July 23rd 2011, 12:00am

Years of suffering with endo

Hello my name is Jennie im23, I have suffered with endo since i 13 doctors wouldnt believe i had it because i was so young so they took my apendix out and stuck me on the pill. it wasnt untill i was 15 and i was rushed to A&E with abdo pain and pv bleed they gave me a lapro and realised that i had severe endo luckily they managed to treat it there and then but from then on i had to go back 6 times for the same procedure and they prepared me to never be able to conceive. I was one of the lucky ones and i managed to get preg in 2007 and gave birth to a beautilful little girl in 2008. my pregnancy had a lot of complications and i was prepared for the worst scenario hysterectomy luckily this never happened and i was put on the depot injection. but i had to come off it because my blood became sticky. and of course true to its nature the endo returned and i had my last lapro in 2009 i got some relief from this and my periods took 9 months to return, now they have come back with a bee in its bonnet i have been in and out of hospital 4 times this year and i get the same reaction their is nothing we can do keep taking the pain killers we wont operate here take the pill. well from past experience the pill doesnt work for me, i was discharged from hospital yesterday after 4 days in hosp being pumped full of pain killers which tbh make you feel worse. i mentally broke down in front of the doctor and my husband had had enough and asked to see someone else as we have a young family we cant cope with it any longer as im always sore tired and usually crying. but he just kept saying the same thing take the pill hold out for the next 3 months and we will review you in 3 months but dont keep coming back there is nothing we can do when i no this is bull**** :box: i went to see a gynae in june and she basically said the same and that she needs to see my old notes from my previous consultant and that i should think about the future which will result in hysterectomy. after finally getting through 3 doctors in the hospital and saying look im not bothered if you take it out i just want to be normal again they came up with the zoladex injection i had never heard of this before and was concerned about having it done because from past experience this just doesnt go away on its on,. my husband asked him what happens if this doesnt work?! he said if this doesnt work then she hasnt got endo. so we have gave it a shot. but i just feel like because im so young they are just pushing me away and not taking me seriously at all when i know whats going on with my body and just want to feel better but i have felt like this for 6 months now and always get the same reaction. also they keep telling me i cant have a smear test because im to young when i have all the symptoms for the big C word and they have even said this themselves, i have bleeding after sex random bleeds always bloated and always feel full. im just looking for someone to say there will be light at the end of this very long dark tunnel and im sorry to rant on i needed to get it off my chest. would appreciate any help or information any could give me. thank you for taking the time to read my story im coming to the end of my tether or i have been there and back xxx

Maria72

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Saturday, July 23rd 2011, 7:15am

HI jenn11 and welcome to :FZ:

I can understand you very well as it took ages for me to have my diagnosis. I was told I was not ill and was attention seeking! they put me on tranquillisers!
There is light at the end of the tunnel! Zoladex is the right treatment for endo and it does work. Zoladex contains a chemical called Goserelin, which is similar to a natural hormone made by the body (luteinizing hormone releasing hormone-LHRH). It works by decreasing estrogen hormones in women. This effect helps to slow or stop the growth of uterine tissue that need these hormones to grow and spread, which is what endo is. The normally clean the endo away first with a laparocopy and then give you the injections.
Endo does cause pain and bleeding, but I would insist on the smear test, if not can you have it done privately? I am not sure how much it cost, but maybe it would be worth doing.
For more info check here:
What is Endometriosis?

Check the endometriosis society website too:
Endometriosis UK

Take care and smile as it will get better soon!
:xxx:

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jenn11

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  • "jenn11" started this thread

Posts: 20

Reg: Jul 22nd 2011

Location: carlisle

Children: i have three children 1 is my daughter and i have a step son and step daughter 3, 6, 9

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Saturday, July 23rd 2011, 10:50am

Thank you Maria, my parents were talking about getting me seen privately as like you i think the doctors think im faking how much this really hurts. i was surprised to find out how many woman actually suffer from is as i dont know any one with the same problem. But now i have seen people in this same situation as myself i have realised that doctors dont really have a clue whats going on with endo and dont really know how to treat us poor woman with it especially if your of a younger generation. Thanks again :) its good to hear that once in a while xxxx

jenn11

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  • "jenn11" started this thread

Posts: 20

Reg: Jul 22nd 2011

Location: carlisle

Children: i have three children 1 is my daughter and i have a step son and step daughter 3, 6, 9

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Saturday, July 23rd 2011, 1:08pm

Also do you know where i could get it done privately? i live in carlisle i have tried to get one on nhs after having my little girl as iw as seeing a specialist for my bladder she asked me to go for one. but i was refused till i was 25!! i now live 10 miles from scotland where you only have to be 20 how is this fair?!

Maria72

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Saturday, July 23rd 2011, 2:39pm

I don't know where you can get it done. BUPA hospitals do it I think as part of the well woman package. Or just see a consultant privately at a BUPA hospital or at any other private clinic near where you live.
Take care

mrsjasper

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Monday, July 25th 2011, 9:44am

also they keep telling me i cant have a smear test because im to young when i have all the symptoms for the big C word and they have even said this themselves


Hi Jen,
I'm not an expert on endometriosis and I am sorry to hear that you have been through so much. However, I am a practice nurse and I do smears as part of my job. I went on an update 2 weeks ago and I hope I can set your mind at rest on your point above. Labs will not process smears done on women under 25 years of age any more. The reason for this is because in all the years before we did smears, when we did them on women from the age of 18, when we only did them after the age of 20, and now when the policy is not to do them under the age of 25 years, the rates of cervical cancer in that age group have not altered at all. And in the meatime the smear test has successfully reduced rates of the disease in other age groups. So, yes it does still occurr in women your age, but its VERY rare and smears do not seem to help pick it up or prevent it the way they do in older women. So your consultants are following the current best practice guidelines. Random irregular bleeding and post coital bleeding can be symptoms of cancer of the cervix in someone your age, but they can also be symptoms of a lot of other more benign things like endometriosis, frequently changing hormonal methods of contraception etc... What needs to be done is for someone to have a look at your cervix. If it looks normal, then it almost certainly is and I imagine with all the treatment you have had that more than a few people have had a nosey. Hope that sets your mind at rest.

jenn11

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  • "jenn11" started this thread

Posts: 20

Reg: Jul 22nd 2011

Location: carlisle

Children: i have three children 1 is my daughter and i have a step son and step daughter 3, 6, 9

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7

Monday, July 25th 2011, 11:14am

hey MrsJasper :) thank you for your information, i was told this at my last doctors that its not that they wouldnt do it, its more the point the labs wouldnt process it, i have spoken to some of my friends and they have had smears because they have had a baby i had my little girl 3 years ago and still nothing. So i guess it just depends?! but yes your right i have had more people look at my cervix than i can to even think about. dignity?! what on earth is that hehe xx




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