18 y/o possible endometriosis ??

[NJG_98]

Hey everyone, this is my first post so not sure how this is going to go...

The past 6 months of 2016 have been a nightmare, in January I was rushed to A&E urgently after having severe abdominal and spinal pains for about 10 hrs that day.

The doctors in the emergency department put it down to ovulatory pain, and gave me diclofenac and cocodamol tablets... bearing in mind in 18 in 2 weeks this has been an ongoing problem for 4 years.

Last year I had an ultrasound abdomen and pelvis scan in A&E which showed a single dominant foccile, this year I has a transvaginal ultrasound showing poly-cystic ovaries... my doctor continued the co-codamol tablets and has given me a 3 month course of the mini pill. The pain and bleeding has got worse, the pain is excruciating and the bleeding was extremely heavy (sorry to be rude..) however I don't bleed regularly, probably every 40-50 days. The pain is there almost every day that my GP has now referred me to a gynaecologist and thinks I have endometriosis and will be infertile...

I've got a previous medical history of an extremely rare form of cancer which attacked most of my body, so infertility was always a possibility since a young age, but reading up on endometriosis the common age is between 25-40, could I really have this condition??? I'm worried in case I need the operation, I work for the NHS and don't ideally want time off work, but I just feel exhausted and lethargic everyday, the pain is becoming too much to handle...

[attummi1973]

hi niomijane,

sorry to hear you have been through alot especially lately...and with your previous ill health you deserve to have a break. Its good you have been referred to a gyanecologist,im 43 now and have only been diagnosed oct 2014 with endo because i had a ruptured ovarian cyst and had to have emergency surgery.

My symptoms however started when i was 19 and at the time it was a severe pain on the right side so was told it was rumbling appendix,as it continued i was then told i had irritable bowel syndrome, with all the bowel symptoms,i remember saying to my family many times that the ibs would flare up around my period...if only there had been sites like this 20 years ago i would've known about endo....so i just lived with the pain and problems til now.

I also worked in the nhs and we are the type of people who dont make a fuss and we just get on with things,who wants to be a patient at their place of work...lol. I am finally being referred to a bsge centre as the general gynae who performed the rupture surgery just offered me a hysterectomy without any other treatment...im been trying to start a family for 5 years so to me a hysterectomy is not an option,he has since washed his hands of me and discharged me. Im Keeping my fingers crossed that the endo specialist i see in july will help me and at least do a lap so i know where the endo is and maybe help with my fertility and severe pain.

So all the info saying its an older person condition is wrong,its only that many of us dont get diagnosed til later in life, symptoms can and do start at a young age..and many of us just get fobbed off by doctors or just get on with life without complaining..hope you get diagnosed soon...and pray that you get some pain free days,

big hugs.

[NJG_98 in reply to attummi1973]

Hi attummi1973, many thanks for your response.

I'm sorry to hear that you have suffered with the pain for many years, I was also told I have rumbling appendix 3 years ago and was told to "wait until the appendix is inflamed" which can burst and cause you to be seriously ill, or death!

Due to my age I'm almost never taken seriously by doctors until I bring up the previous cancer, which I don't like to do as I don't think that should be an excuse to get seen or be taken seriously

I have tried IBS medications and all sorts, nothing seems to be working that I'm slowly losing hope. I hope I can see a gynae doctor soon and be diagnosed, a hysterectomy sounds awful...

I hope the BSGE referral goes through for you, and you finally get some answers. All the best with your family planning, I really hope you get everything you want! Thank for your for your reply, I'm glad to hear I'm not the only person to have symptoms at a young age.

All the best for you x

[Allyson1 in reply to NJG_98]

Please don't be afraid to be absolutely frank with doctors. I didn't feel taken seriously for a long time, so I censored myself. It gets in the way of care, in the end. Best of luck!

[AmyLeighxx]

I had problems with my periods pretty much from when I started them at age 11. After going back and fore to my GP for years I was finally given a laparoscopy and diagnosed with endo at age 20, so yes it is possible you have it at your age. But it always better to be diagnosed early so you are aware of it and can be given treatment for it. X

[NJG_98 in reply to AmyLeighxx]

Hi AmyLeighxx

Sorry to hear you had problems, I feel much more relieved that it can happen at my age. Hope treatment is going well for you x

[Maria36]

Hello,

I hope you get a diagnosis quickly, its horrible that some women have had to wait decades while doctors have told them that what their going through is normal.

I'm currently waiting to see a specialist as well as my GP thinks I could be suffering endometriosis. It took me a while to get a doctor who would take me seriously, I would tell the doctor that when I started me periods that I never had any period pain and then suddenly I was in severe pain during my periods, which got longer, and would wake me up at night crying, I would struggle to get out of bed to go to college or work. My education slipped and I struggled to keep my grades up but I didn't know what was wrong and everyone said that it was 'normal'. Even a couple of doctors told me that it was just period pains and to take some pain killers.

That was about nearly 2 years ago now and the pain has only got worse during my periods so that I spend the whole time in pain now instead of a couple of days. Its really started to affect my self confidence as I now go outside wearing heat patches on my tummy between my hips to help with the pain, or I'm worrying that ill randomly start my period and ill be in agony in the middle of a shop with people around me.

I'm also in pain throughout the month as well and it really affects my social life as my friends don't understand why I don't want to go out partying as I'm exhausted all the time. Or why I don't how many guys any interest even though I'm single, that's because sex is painful and I felt humiliated when I started crying with an ex in the middle of sex and I worry that it will happen again.

I'm glad you stuck to your guns though, I'm 20 and when I told a couple of doctors something wasn't right a couple of years ago they made me feel silly for what they said was normal period pains. I wish I told them that I knew something was wrong then, Now I'm 20 and loads of my friends are in happy romantic relationships with a baby or a baby on the way, moving in together, getting married etc while I'm still single.

Al my best wishes

Maria X

PS: my gran had breast cancer and ovarian cancer and she still conceived my dad after so don't give up hope X

[NJG_98 in reply to Maria36]

Hi Maria,

Thank you so much for your reply. I'm sorry to hear you've had a rough couple of years with doctors, that's the problem these days it's hard to find a doctor who won't just shrug you off and disregard what you're saying. I hope you get to see a specialist soon and get some answers!

You shouldn't feel embarrassed at all, I understand why though. being in pain or constantly exhausted and lethargic isn't nice at all, your friends should understand that and accept you for it though, you can't help not wanting to go partying all the time because you feel unwell.

I only recently in the past year have suffered with terrible period pain, but I don't seem to get them often, I just have constant pain throughout the month and no pain relief seems to help, do heat patches work for you? I might have to give them a go...I'm so desperate for the pain to go right now.

Also don't worry about not being with a long term partner right now, you're only two years older than me - still young and have time to find someone! i completely understand that you're afraid of painful sex and getting intimate with guys, but when you find the right genuine guy for you hopefully they'll be understanding, and hopefully you will be as pain free as possible by then.

All the best with your referall to see a specialist, I hope you get the answers you need and the best treatment!

& your gran sounds like an inspirational woman, that gives me a lot of hope that one day I'll have my own little family

big hugs x

[Maria36 in reply to NJG_98]

Thanks, I'd say ive grown older and wiser and that's why they listened to me this time but really its just cause I became bitter and twisted so I nagged them for months, kept a list of symptoms that I experienced etc so that they had to listen to me.

My friends don't know what I'm going through as I haven't told them. I told my parents and sister & it didn't exactly go down well, my dads really supportive (I have an aunt with endo so he told me to contact her and ask for her support) but my mom and sister don't really understand the pain I'm going through. For ages they just thought I was lazy because I didn't let them see me cry or tell them about it.

I know 2 years! It really does fly though & I've always wanted to settle down with a loving family so another 2 years could fly by before I know it. Looking at some of the amazing women on here though and what they've gone through to try and have a baby made me realise that I really want a baby & I would be willing to go through all that to have a baby of my own.

I hope you do have a family some day, I'm sure you will make an amazing mom x

[NJG_98 in reply to Maria36]

Oh bless you, at least you were finally heard and they're doing something about it now! And they don't need to know as such, just the fact they know you're not up to it, they should respect that I've become so broody the past couple of months being told I'll probably never conceive.. but it's all a waiting game. I've read so many posts on here from incredible strong women who've been through so much and still had a little bundle of joy at the end of it, hopefully one day that will be you or i! I'm sure you'll make a great mother! x

[Maria36 in reply to NJG_98]

Haha I agree, my twin sister and best friend respect my decision so that's all I need. I know the feeling, when I was told that I definetly had a problem with my reproductive organs (this was before they discussed the possibility of endo & they thought it might be something else) I freaked out & started wondering where all my time went.

Yeah ive read loads of them, how so many women spent years trying to conceive & succeeded gives me hope. Thanks, I hope I make an amazing mother.

its not that sad, I wrote in the diary everything, & I do mean everything because I didn't want to spend more months being fobbed off. During the night get a hot water bottle & drink loads of water or green tea. I find sugary drinks like coke aren't good for me

X

[NJG_98 in reply to Maria36]

I always believe miracles happen when you least expect them!!! and I've started drinking so much water lately, can't stand green tea of fruit teas so I've stuck to water only and it seems to help, I can't handle hot water bottles during the night but when I wake up I use a wheat pack around the lumbar spine and my hips and pelvis to ease off the pain, just want to see a specialist now...x

[Maria36 in reply to NJG_98]

Oh I forgot! heat pads do help a bit but I went to my GP and told her I was still in agony with cocodomol so she wrote me a prescription so now the pain isn't so bad, sadly I'm still in pain but its better than I was before. I'm in pain all month too & I stressed that point to her which I think helped.

X

[NJG_98 in reply to Maria36]

Ahh brilliant thank you, i've started a pain and symptoms diary ha ha how sad am i... hopefully it helps me get heard by the doctors though, I'll be going back if these tablets don't start working any time soon! x