Seeking support

Hi

This is my first time joining the forum and your stories really reached out to me and the reasons why I wanted to be a part of this group.

Similar to a lot of you,I have always been told I am either too young or just someone who 'can not handle bad period pains'. I will share with you a little about my background and the different types of treatment I have had for you to see if any can help.

From the age of 13 I also couldn't go to school for a couple of days because of the pains I was in and spent many occasions going to the doctor. After I told them it is more than a period pain they sent me for a scan but not always for endo show up so they kept telling me it's period pains and to take more pain killers. From the age of 13-21 I tried 14 different contraceptive pills, all which I either bled through or had negative symptoms with and it got to a point where I would spend up to 3 weeks a month heavily bleeding, both through a tampon and sanatry towel which I had to combine together all the way to my mattress. I was lucky I was in a long term relationship but it put a strain on my sex life and quite simply.. being what a 21 year old girl should be like. That summer, I collapsed in pain on the train on the way home from work as the pains I get I describe as a mixture of being kicked/punched/winded and contraction pains all at once and was rushed in to surgery as I had a 6cm cyst and they thought my ovary was twisted but thankfully it wasn't but that's when they discovered my endo.

I won't go in to too much detail as the history is long but it's 3.15am and I need to finally talk about how sad internally I feel from this disease.

I am now 28. I have just had my 5th surgery which caused further complications affecting my breathing due to the stress of having 5 surgeries in 7 years which I've spent the last 2 months having physio for. I have endo in my liver, my bowel, it has twisted my Fallopian tube to the point where they can't unstick it and I have lost the tube and my uterus is 50% bigger than it should be as endo has filled inside it and the only way to remove it is a hysterectomy which I don't want. I have had multiple cysts, adhesions and scar tissue and had the marina coil for almost 6 years.

I have now started my second round of an induced temporary menopause (the first one I had was at 22, another relationship killer) and what I will say is, the zoladex (the menopause injection) has signifacntly reduced my swelling, my pains, allows me to feel good about myself and being intimate with my partner but I feel very alone. My friends are amazing and so supportive as is mt boyfriend but the truth is, none of them understand what it's like. How it affects your moods, your emotions, your confidence. The embarrassment of telling your boss you can't go to work because of how much pain your in and the quality of life it effects. I feel like it's changed me in to a lesser person.

I'm really hoping this group can help me to realise it isn't just me and it gets better.

8 Replies

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  • Hello Charlie1616

    My story is very similar to yours from my mid teens to about my mid-late 30s. I'm now 48 and just about to get my 3 Mirena which should take me though to menopause.

    I wasn't taken seriously (symptoms only treated) or the problem properly diagnosed until 2005, when a colleague shared with me she had the same issues and recommended a private gynae and nutritionist, who helped identify and sort out my endo and more specifically adenomyosis.

    Until then, my life was ruined by the stress, pain and discomfort of my heavy periods. Contemplating a relationship was near impossible and my confidence from a relationship point of view has suffered.

    I am currently trying to get an emergency NHS referral for a scan to see if my current Mirena is in place or has been expelled in a clot from a recent heavy period. The doctor at the family planning clinic couldn't find the strings to remove it and I was in total agony and have requested that the new one be fitted under a general anaesthetic as the last one in 2011 was, when I had a colposcopy and D&C. First I need a scan to identify if the current one is still there!

    I'm in control of my condition but it's been an emotional rollercoaster trying to get treated or just get it taken seriously.

    I probably could have had children, with medical intervention, but that ship has long passed and as I try and get my head around menopause, I'll never not be sorry about not having had a child.

    But I'm in a good place now and happy to share my positive treatment experiences if it'll help just one woman feel better and get her life back.

  • Thank you for sharing your experience and I'm sorry to hear how much of a tough time you have been having too.

    I have everything crossed for you and really hope you get your scan and it goes smoothly and everything is okay.

    This is a great place to boost positivity and confidence with each other :)

  • It sure is :)

  • What are you talking about LisaLee? If you found a miraculous cure please do tell what it is and don't talk nonsense it doesn't help anyone

    To Charlie1616 sorry about that, and I'm really sorry you have suffered so! I find the injustices in being turned away when we know our own bodies hard to stomach especially as I've gone through it. I don't have a partner my mom is my support, whole life flipped upside down when after my c section adhesions grew and caused immense pain, anyway I'm 29 and living back at home because I've got to the point where I just can't cope alone. You will read lots of stories on here that you can relate to and that believe me is sometimes enough, I have another illness which is so rare there are no forums for it or support so while I'm not saying think itself lucky, I do think it's a blessing at least to be able to vent on here to people who understand.

    I'm really pleased to see you have support from family and partner, have you ever pointed them to this site? Maybe you could show a few of the stories you really relate to and then when they've finished reading you could just say that you feel like that. I will say to my dad that I feel really poorly today and he can say the most unthoughtful things back but I think it's lack of understanding and education on this subject, plus a man really is not going to understand the pain of a period, in a lot of guys heads I'm sure they think it's just part of being a woman.

    Try and focus on the good things, the hugs you get and comfort of knowing your partner is there to them just silently making a cup of tea, it's all love and support for you. They love you and it's hard to see someone you love poorly.

    Prayers and hugs x

  • Thank you for your message and support. I am so sorry to hear what you are going through and feel for you that you've had to move back home to help you cope. I also am sorry to hear that you have another illness and wish you nothing but a healthy and positive recovery.

    I only found this group yesterday so I think In time, you are right, I will show this to my partner.

    Thank

    You so much again :) x

  • Thank you so much! I am already gluten and dairy free but perhaps will also try sugar free to see if that helps . Thank you again for your advice and support :)

  • Sugar-free certainly helps and sometimes it's just non organic cows' milk that's an issue because of the hormones given to cows to boost their milk production. It's screws with our already out of synch hormones. Marilyn Glenville is ace in her writing about this.

  • Hi Hun what country are you in ? Welcome to chat anytime . This shit has taken up 15 years of my life and recently I had hysterectomy which I'm kinda ok with except it did bugger all to help my symptoms . Figured out after 3 months of bad constant pain taking loads less hrt helped . I'm just asking what country to get an idea of your healthcare system , it does sound a bit like rubbish treatment you've had that's all . I stayed away from Mirina after a bad experience with an emergency coil when I was younger for contraception. I too found zolodex helped a lot I managed to get 2 years of it as protocol here is 6 months . I do feel Ive been given a hysterectomy to save money the zolodex is expensive for them I think. Anyways here anytime . Carol xxxxx

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