my journey with endo and the battles it brings

[cherryblossom83]

ok i will be keeping this blog as i dairy and documenting my wins and fails as i go . so background in a nutshell, first diagnosed with ruptured appendix at age 13 , this turned out to be a ruptured ovarian cyst. Then through out puberty i suffered horrendous period pains , time off school caused problems and eventually left school because i was told not to go back. ( they didnt believe i was ill) at age 20 a complete miracle happened and i fell pregnant , i had a rough pregnancy with numerous complications and an even worse delivery, spending 8 days in slow labour and my cervix failed to dilate so ended up having a c-section which lead to me haemorrhaging and having 5 transfusions. after that i spent a year bleeding and in chronic pain and waited 36 months for a referral to gyny. I was then diagnosed with endo but was put on the pill and given painkillers for 4 years and told that was my only option. Then in 2011 i was rushed into hospital in even worse pain , this was the result of now advanced endo and a 6 inch chocolate cyst.i waited three months for this to be removed and was given zoladex treatment for 5 months. I had a relatively normal few months once i had recovered but 4 months ago the pain came back. I have another chocolate cyst and the endo has caused my bowel to become attached to my uterous. another lap in exactly 4 weeks. Now that your up to date. Over the time period between being diagnosed and up until 4 months ago i have been sacked 4 times for taking time off work for endo and menstral pain , heavy blood loss and fatigue.the best being when i received my p45 the day i went in for my second lap in 2011.I now intend to apply for D.L.A . Not for the money , id like you to know but because i feel that without the legal protections afforded to people who claim disability living allowance , i fear i will never be able to hold down a job as it seems this endo will never go away. In my case and many others it is a real chronic condition that affects every aspect of your life.Requiring me to have surgery every 12 to 18 months , hormone treatments , time off for recovery or chronic pain are regular occurrences and all this is good cause to be dismissed from one job after another. If i am successful , no employer can refuse time off for anything relating to this illness, whether that be a scan appointment or a week of bad pain or 4 months whilst waiting for surgery and then recovering. I will never again be discriminated against for having had time off for something i do not choose to have but simply , have no choice but to live with and manage as best i can. My aim in writing this blog is hopefully to inform others through my own experiences , offer advice where i can and maybe provide some inspiration to others who suffer. I have felt so alone through the years and recently joined this site for some support. I hope i can inspire you and make myself and hopefully other sufferers feel less alone. please feel free to comment , or if you have any advice or experience of your own to share , i would be great full to hear your views.

[Sunflower846]

Wow, you've been thro so much. Well done for coping altho i bet sometimes u wonder how u have. Thats so bad about ur work, im lucky my boss is lovely but he is a pharmacist so understands illnesses. I am just new to endo. Well newly diagnosed but suffered for about 10yrs. I am now 31 and went to doctors for yrs but then thot it was normal to have such pain during my period and to flood my tampons. I was referred to a PMS clinic when i was about 26 and sent away with nothing to help and the doc i was seeing had left so what was the point in going back. Had my lap just november there and the found severe endo with my ovaries pulled in and stuck to my bowels, endo all over my cervix and down my vagina walls. I had most removed and organs put back in place but my right ovary is covered in endo deposits that cant be removed thro ops, endo still inbetween my womb and bowel, gynae wanted to shrink it and put me on treatments but with severe side effects and hair loss i am not doing them again. Im bak at consultant in june and he wont be impressed that im refusing treatment but ive lost my hair before due to alopecia and ive lost 50% of it since jan and blame treatment, but i dont know what my options will be now. Sorry went on a bit there. Hope ur well and thanks for sharing ur story, xxx

[cherryblossom83]

thanks for your comment lynnieb846. im fairly new to all this although ive lived with endo sor years. i experienced some hair loss too , was yours with zoladex? dont refuse treatment but tell them you want to know what other options are available to you for treatment because the side effects were too much for you with your last treatment.please keep in touch and let me know how it goes i would love to get to know some people here as we all have a common problem and its helping me so much to finally talk to people who understand and can be genuinely supportive. il keep posting if only so you and others can see how my journey is going and offer advice and like i said maybe il inspire somebody else through their own struggles. good luck sweetheart , much love lexi (cherryblossom83) xxx

[Sunflower846]

Hey i suffered alopecia 4yrs ago so already suffered from hair loss but all my hair was back. It started falling out during my treatment with decapeptyl, then provera tabs, then danazol I cant ever risk it as my hair is still coming out and i have stopped all medication even my painkillers. My hair is much more important to me even tho it shouldnt be but i have no confidence as it is. I think my only options now are the mini pill, as i suffer migraines and surgery. I may end up losing my right ovary cause i cant shrink the endo as i wont do the treatment. Are u on facebook too? There is a site called endometriosis uk official discussion group and those woman are amazing. Ive learnt so much and met great people. Find me on facebook if u wish and i could add u to the group. will private message u my name. Hope ur doing ok too. xxxx

[Sunflower846]

Been trying to message u but wont let me. My name is lynne bruton on fb xx

[cherryblossom83 in reply to Sunflower846]

ok il log on and try to find you. i understand that your hair means so much , i was horrified when my long thick dark red curly hair suddenly went limp and very thin. so i cant imagine how alopecia must have affected your confidence. just to say also , cerizette is a very good contraceptive pill that is used for treating endo and is good if u are a migrane sufferer, i was on it for 3 years and for the first two it worked well with little to know side effects. il tryn find you on face book. good luck hun .and please ask about cerazette.

[Sunflower846]

Thanks i will ask my gynae in june when im back yeah will keep each other posted xx

[Juleyanne]

Thank you that is very interesting. I worry alot about returning to work as I suffer ongoing chronic pain and accompanying often extreme symptoms with bowel and bladder. I have had numerous surgeries and things still are not right and I am at the hysterectomy/ovary removal stage but am very scared of worsening already bad adhesion problem with diverculitis thrown in for good measure! I just don't know what to do next have surgery or try to work and probably get sacked!

I was once advised by Citizens Advice to apply for DLA but was so overwhelmed by the new ESA process, which is beyond stressful especially when your in pain and generally unwell and fatigued, it seemed a bridge too far! I have heard it is now difficult to apply but reading your comments, I was interested in the protection you say it gives you if you do eventually commence work. I didn't know this. I wasn't sure that endo, adhesions or diverculitis qualified you for DLA, has anyone else any information on this? Eventually I would like to try some part time but am worried I might not be able to manage the 16 hours minimum required with all my pain, symptoms and intense fatigue.

I would be interested to hear from anyone else with similar set of circumstances and if they get help from DLA.

[LauraLou1983]

Lynnieb846,

Sounds like how was in my old job, they made it very difficult for me to go to my hospital appointments as well, at one point they wanted to get a work doctor to look at me but that wouldn't have helped as they would look at me and say I was fine to work etc. I had pain in my right side and the hospital kept saying I could be pregnant but I knew that I wasn't, I couldn't have endo as I was not sexually active at the time but I had an op after about 6 weeks of pain and in and out of hospital and they also kept saying it was my appendics but it wasn't. Had a camera in my belly and it turned out to be endo.

I was ok for a good few years and then was admitted to hospital in the September, October and November and had another operation and was told that there was nothing my local hospital could do so referred me to Arrowe Park in the Wirral where they did find that my right ovary was stuck to pelvic wall and placed the marina coil where I do still have pain but as bad as the pain was. I was given Oramorph and tramadol for the pain as normal pain killers would not help with the pain but now they help which is good.

I had my hours cut as I felt it was the best thing to do for a while, I also tried to get extra payments with DLA and they would not allow me to have this as I didn't fit what they wanted I have a new job now and as I am not in the job I used to be in has helped within myself and don't have pain like I used too but I do still have pain and i know nothing will help until I have the lot taken out but as I have no children yet the hospital won't do this operation for me which I am glad about but when the pain was at its worse all I wanted the hospital to do was take it all out.....

Regards

Lauralou