Struggling with lots of things? I can help you get a focus!

Ok here goes.

I have commented on a few blogs and questions and I hope I've helped some people.

Let me tell you my story, in the hope that I can help others, like you. I am now 34.

I had gynae problems since I was 15. I have been told its ovulation pains, stomach migraines and all in my head and I'm making it up. Tough to hear when you are so young and impressionable. By 17, things were pretty bad, heavy painful periods and struggling every month. Eventually I was diagnosed with PCOS. However, whilst I have some parts of the syndrome I don't actually have the ovary appearance, which has baffled experts.

I'd been in and out of hospital for a few years with really bad pain but again just fobbed off. one told me if I had a child it would make everything better.

I got married at 23. Tried for a baby instantly. It didn't happen. We tried for 5 years. I craved this baby more than I thought possible. I had my name on the IVF list. I was having the 3 monthly tests for levels. The second test came back and I was told "it was an ok reading". That month passed and no period. Not odd for me as I would often by now not having monthly periods. anyway when the next one was due and not here and I felt a little odd, so I did a test.............it was positive! At last! My prayers had been answered! I was gonna have a baby!!!

That baby came on 30 November 2006, after a very long labour of 8 and half days!!!! My little miracle was put in my arms and everything suddenly made sense in life. She is now 6 and I am thoroughly blessed to have her. I thank god for her every day without fail. We have tried since she was born for baby number 2. Nothing has happened. Yes, I have one and I am eternally grateful for that but you see others with 2,3,4 children and I sit and think why not me???! Having one makes you realise what a blessing a child is and how some people don't realise that.

Things continued on and I was back and forth to the doctors with no periods and again fobbed off. just had a baby etc.

November 2010, I had the worst period ever and am sure to this day that it was a miscarriage, although I didn't know I was pregnant. Anyway pain continued to grow and by Christmas I was in agony. I went to the doctors who gave me antibiotics for a pelvic infection. 3 days later I was admitted to hospital, after having a scan. I had a 4.6cm hemorraghic cyst. The most extcruciating pain I've ever had. Was given antibiotics to flush out my system. Pain continued all year, leaving me unable to leave the house most days. In June I was signed up for a lap to find out the cause of the pain. Endo was only mentioned in passing but this is what I felt I had since I was 15.

26 August 2011, a day that would change my life forever. I had the lap. Sustained damaged to my epigrastic vein on the trocar entry site. As I had a blood clotting disorder I'd had a shot of clexane before the operation. I bled. They stopped the bleed. The op carried on. I had endo removal, adhesion removal and a cystectomy. 2 hours later I was in recovery. I never regained consciousness. Blood pressure was 40/20 and I was critically ill. they'd left a drain in and 2 hours later they realised that I was bleeding. By the time I was taken back to theatre, I had lost 6.5 pints of blood and needed resuscitation and 6 litre blood transfusion. I had the second operation. I was taken down at 1.30pm I was eventually taken back to the ward at 10pm. hooked up to all the monitors and drugs possible. I found out that I had endo on the intra uterine ligament which is a painful place for it to sit apparently.

The next day I had another blood transfusion as my levels dropped. After 5 days in hospital I came home. Pretty miraculous really. Or so I thought. I was then diagnosed with a DVT. I was on warfarin for 6 months. The abdo pain was unbearable and eventually at the end of November I went back to the ward and knocked on the door. A doctor saw me and had loads of tests, scans, swabs etc and they realised I had a massive infection where I'd had the bleed in my abdominal cavity.

5 months later and 8 courses of antibiotics, I was the lowest I'd ever been. I'd lost my fight for life and really struggled. Eventually I had some kind of emotional breakdown and then had a fight on my hands with depression. Pretty bad some days. Helpless, blackness, and unable to feel anything except pain, and thoughts of why is all this happening to me??? If I could make sense of that I'd have been so much better about it all but there are no explanations. It just was.

7 months later I was on the operating table again having another lap as I was in agony. Very worried and stressed but I went private this time as I'd picked a specialist I'd heard lots about. Best thing ever for me. Found out that I had some puddles of blood remaining in the pouch of douglas and that was what was causing the pain and also another lot of adhesions had formed. 3 days later I was finally back on track. I walked 3 miles, a few twinges but it was me!

I'm now 15 months on from the first lap, I am stronger but I have to admit there have been many black moments and struggles. I am now off the anti depressants, had a course of CBT and finally getting my life back. 3 months ago I laughed and finally felt my laugh and happy. Its been a long road but one I'd do again in a shot to be where I am now - it has made me who I am. I am still having problems with my periods but I think that I am accepting of that.

I have a fantastic husband who has supported and nursed me, a beautiful daughter and a fairly good life. almost pain free most days too so it was worth it

Endo nearly took my life BUT its not gonna stop me!!! You are only here once, you need to make the most of every moment!!! life is for living!!! You gotta do what you gotta do!!!

Happy Christmas to you all! This is one that I am going to enjoy!!!

xxxxxx

8 Replies

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  • Thank you so much for sharing your story, you've certainly been through the mill, but well done for fighting back against everything that has been thrown at you, i can feel the emotion from everything you have said.

    I've not had any laps yet, for one reason, i had a battle with ulcerative colitis which is a disease in the bowel, and had a 12 hour operation which was basically life or death in 2005.

    I now have an ileostomy, which is a bag on my tummy,

    I have seen 5 gynae's and they have all said that because of this surgery they wont give me a lap incase they damage the remaining bowel,

    ive tried so many different things, im now awaiting a scan in january to see if the cysts on my ovaries have cleared up, if they have they are starting me on zoladex, im pinning everything on zoladex, i recently lost my job and have started spiraling into a dark hole that is difficult to get out of.

    i wish you all the best for the future and enjoy christmas with your miracle xx

  • Thanks for your really lovely comment. I am so sorry to hear your situation. I bet you have terrible days. I had tests in the beginning for chrons disease and those weren't pleasant so I cannot imagine all you've been through.

    Really hope zoladex works for you and gives you some relief. I can understand why they are concerned about a lap but I know when I was in pain and affecting my quality of life I'd have done anything. really hope you get some relief and respite from the pain. You've had more than your fair share.

    Please let me know how you get on. Wishing you all the very best.

    Xxxxxxx

  • The more I search, the more horrific stories I hear related to endo and adhesions. Yet, this condition is barely mentioned in society! It's a huge issue and affects so many women, causing years of debilitating emotionally draining pain that has the potential to wreck lives. In some it robs them of fertility but in virtually 'all' cases it seems to be 'swept under the carpet' by society and given scant regard by the medical profession, why? I recall many years ago after having a damaged diseased fallopian tube removed (I eventually lost both), getting a three line letter from the hospital

    after the operation stating 'biopsy found evidence of endometriosis in the tube' but after that nothing!

    I had no information, I did not even know what endo was! I went on to have years of pain and ops and later a Laparoscopy and Hysteroscopy found extensive endo and adhesions adhering tube stump to ovary and ovary to bowel the other side and it had also spread into my abdomen! Now Hysterectomy (radical) is my likely next option. Luckily, I was not maternal but it took my fertility, it wrecked my relationships (I am now single), severly affected my chances of a successful career and emotionally and mentally reduced me to a virtual recluse, hard up and pill popping to cope with multi symptoms that for many years I was told was 'in my head' or simply IBS. I have been to endo meetings, trawled internet and realise now the magnitude of this problem worldwide. It is not even considered a disability which is astounding! I realise it affects different women differently but

    early intervention by the medical profession, better understanding and support and management is key.

  • Juleyanne, I am so sorry to hear your story and how endo has affected a lot of things in your life. You are right. People just don't understand how debilitating it is until you suffer from it, or know someone that has. it affects every aspect of your life, as you say.

    I heartedly second your last sentence. I couldn't have put it better! I was fobbed off for 17 years before I eventually diagnosed!!! 17 years!!!

    I really hope that you get a solution and that you can be without pain. The daily grind of pain, day in day out, relentless is tough, really tough.

    With best wishes.

    Laura.

  • Thank you for posting ur story with us, I really feel for you. I also found it very hard at a young age to get drs to listen to me my dr kept telling me I had ibs and that I don't relax when having intercorse. I finally got a diagnosis of endomeotris at 18, that was 4 years ago. Now at 22 after 2 laps I am really struggling, in extremely low. I am on the decypeptal injection and hrt and now northeristerone tables . I am extremely tired and her very bloated and have been bleeding on and off weekly since September. I really want a baby Becuz I feel so low that what if I can't get pregnant . I'm not trying yet but I plan to try next year . I'm currently in my final year at Uni. I've been with my boyfriend 6 years. I dt no how he copes with me I have no sex drive what so ever. I have knowing to talk to about all this because know one I know goes through the same as me. Listening to others helps me relate to myself. Thank u xxx

  • Dancer53.

    thank you for commenting on my blog. Your sorry is harrowing to have undergone so much treatment/drugs at only 22.

    Whilst I had problems from 15, I wasn't dealt with properly until 17 and then it took another 17 years to get me here today. Its a long battle and you know when something's not right with your body.

    I really hope that you can get some relief from the pain and are able to have that baby (or even more!)! I was told during that years that me having a baby without some kind of assistance was virtually none existent. My daughter came along at a time when I was least expecting it and given up all hope. Miracles do happen. Keep positive. I know its tough, really tough some days but beyond everything there is hope! My daughter's middle name is Faith. I had to keep faith that I'd be granted my wish - I was - I hope that you are too.

    Sending you a million hugs. Hoping that you get all you dream of and more.

    Laura. x

  • Hi laura

    Thank you so much for your reply. It means a lot. I am very happy that you was able to have a wonderful daughter and I do hope one say that will happen for me. I would like go start trying sooner rather than later. I have been with my boyfriend 6years and he has been fantastic but recently iv been the worst I've ever been with my endo and tbh I have no confidence and think I'm ugly and my tummy gets that bloated and swollen I look 4 months pregnant, even though I'm not. I am petrified all the time that my boyfriend will leave me and he has someone else Becuz sex for me is agony and I'd rather not have it . I really struggle but thank you for your comments it helps me a lot xxx steff xxx

  • OMG!! Everything you have said Dancer53 is exactly the same as me. I get bloated and look pregnant too! Everyone looks at me like I'm dirt on their shoe because I'm only 16 nearly 17 but they don't realise it's not that at all and it infuriates me so much. I think that's because of the bleeding into the body and it expanding because of irritation and so on, that's my only explanation but it's probably not correct. I also have many days where I feel so ugly and fat that I hate the way I look. I also can't have sex properly and I get so scared my fiancee is going to leave me as he sometimes does get fed up with not doing anything. I have had a gynaecologist say I need to see a counselor because I need to stop thinking I'm in pain and to stop the painful intercourse, don't be anxious and tense up, just relax. I got so angry with every one telling me it wasn't endo then last week I went to my doctor and she listened to me for once and said the endometriosis I was originally diagnosed with, has most probably gone to my bowel. I cried for about 15 minutes whilst my mum carried on talking. It wasn't because I was sad that it had gone further, I was so relieved that for the first time, someone sat there, listened and said I wasn't insane, I was right and I am ok to worry about my health and my chances to have children. I am now going to a really good doctor in Kent (far away from me but worth it if he's good) I wish I had been able to go to uni like you and do the job I wanted but with the amount of pain I'm always in I'd end up having to leave as I'd have every other day off it's that bad. I'm am so glad you've been able to go to uni and get an education and partly enjoy it. I hope everything goes really well for you!!

    Leya :)

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