Trying to get diagnosed with Endo

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So, I'll try cut a long story short. Kinda

I've Always had heavy periods from starting at age 13. As I approached 18, I was having two periods a month, painful, heavy, sometimes clots, pain during sex, immense back pains and high body temp. Dr's told me I'm young, messy hormones, will settle, here is the mini Pill.

Mini Pill made me bleed every day of being on it and made me depressed. I cannot have the combined pill due to migraines and DVT. Due to how heavy my period is, I can't have the copper coil, as I'm already borderline anemic when my periods are bad (when having 2 a month I was anemic) they also tried the pill that stops your period, mostly used for honeymoon and holiday sex, but it was tried to stop my double periods, and the back pain! Unexplainable!

I had various blood tests taken, when I had a blood test during the time of having two periods, they said I was showing as potentially infertile? But not to worry, as this could be the "false" period. (I worried) I then tried the injection which I also bled for three weeks and spotted.

Between all these Hormone treatments, it took about two years of constant back and forth with doctors. Usually I'm assumed to have an STI (brilliant) as their answer (I have never had one but they always test) then, when they're negative "my hormones will settle, I must be stressed" .

Eventually they said the Hormone Coil is my answer, I obviously am willing to try anything. So it was inserted, that night I had pains, like bad period pains, I assumed it was normal as it had just been put in that morning. The following afternoon (a day before I was due to fly to India for work) the pain was unbearable, and my legs had flared in rashes rejecting the coil. Dr's told me to go straight to AnE. One nurse told me it was infected (I assumed this), but she was in the AnE room, I was then passed on further (charming right). However, I was then kept over night as they said they couldn't see the coil and assumed it was implanted in my womb or had taken itself for a wander.

I then had the ultrasound camera the next day to check further. Some cysts were spotted. Confirmed I also had a tilted womb, and could struggle for a baby (not that I'm in any fit state to try). They told me the coil was fine, it was in place and thy could see it and it just had slight infection, but don't fear, that's normal due to being put in? (worrying).

Due to still being in pain, I asked them to take it out while at the hospital, but no nurses were available (thankfully) and they sent me on my way saying I'm fine. Day after, I rushed into an emergency appt with my Dr's due to the pain, they said it can't be removed as it was infected and could cause PID if they removed it. Lucky for me the hospital had no nurses the day before, as they didn't diagnose the infection or provide antibiotics. Their actual diagnosis was "constipation". Even though, excuse the French, I'd had a s**t an hour before their scan. Utterly fobbed off.

I had also just met somebody around this time, so as you can imagine, confidence in the boodwar or in the general vaj region, was not an option, especially due to the infection which took weeks to clear! I had to explain the situation, which isn't something you want to do with a fresh love interest. Sorry I'm abit broken down here.

So three weeks of anti biotics later, feeling drained as I bled every single day since it was put in. My Dr's finally agreed to take it out. Buuuuuuuuut they couldn't find it, s**t themselves and sent me to AnE where after all the same scans again, it was basically fish hooked and ripped out of me! Painful and gross! And also followed with another 2 weeks of anti biotics. I lost alot of weight and became very fatigue and caught a shed load of colds from my immune system being killed by 6 weeks of antibiotics! The second round were 2 different types of strong antibiotics, followed with a blood blocker tablet and a cheeky painkiller.

After that ordeal and being told it was my last option in Jan 2018 I came to the, I give up stance. I just wanted to recover and would take extra painkillers to endure a normal day of life where my period isn't causing me jip. Since, I have been suffering immense pain in my periods, pelvic pain before and during cycle, sometimes in the middle, which I'm assuming is ovulation pains? I'm talking pains that have your body burning up and wake you up in the night.

Apparently (according to my partner) I become restless in my sleep, moany and fidget alot to then wake up in agony. If I take a mefanamic acid as soon as I wake up in pain, after an hour, the pains are not as intense.

I have been back to the Dr's since, who prescribed mefanamic acids (highly recommended however I take every 4 hours not 6).I actually bought these myself from India a year before the Dr's decided to prescribe it me, naughty I know, but, I was in pain and a friend recommended them as they worked well for her. I'm also not sure if they cause more pain sometimes due to clotting the blood, which for me, is already the case?

The next month, I passed out from the pre period pains on my landing, and decided, the give up attitude is not an option as this was controlling my life. I bleed through clothes, and can bleed through a tampon and pad easy. As you can imagine, with the pain and anxiety of bleeding through my clothes when I'm on, work and social events aren't appealing, nor is sex. Which may I add, can hurt. I basically want to curl in a ball and be alone with a hot water bottle and some strong ass painkillers

So, I have been on a waiting list for a potential laproscamy (I can't spell it) for 4 months, but finally, an appointment in August. Now, I'm worried I'm going to be passed about, as every time I have gone back since with my issues, we start from the beginning and go round and round, make little progress, then back to beginning. I've now had back pain for 3 months (rest and painkillers were the answer) and I get pains in my lower abdomen frequently. But I "shouldn't worry" apparently.

I don't know if I maybe have PID onset, or my endo is growing and applying pressure around my womb and organs, is that a thing?

I've shared my story to see if anyone has advice or has had similar issues? Or if there is anything to say that makes a Dr listen! I feel like surely heavy periods, which are now almost regulated to every three weeks, obviously sometimes I get the cheeky week early one that likes to pop up, literal pain in my arse! Surely this irregularness and endo in general affects your mentality?

I was never really a low person, but I feel (minus the PMS) I find myself down and drained and just feeling... Meh. My anxiety seems to have got worse, probably due to other life stresses ontop of me wondering if I'm infertile or have a womb covered in endo.I've seen it takes years to diagnose, and I'm currently in the 6th year of going back and forth now.

I'm considering private if I get no further after my next appointment, is this advisable?

Thanks for reading, I know it's a long one

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6 Replies

  • Posted

    Goodness, you've got one of the hardest cases i've ever heard of! Don't know how you've made it this far.

    None of us can know for sure if you have endo, but you've sure got a nightmare. You're having your laparoscopy pretty soon and that should answer that question. Nowhere did you say how old you are now and i don't know if you started counting that 6 years from age 13 or 18. Either way, you've already discovered the reality that the younger you are with such issues, the more the docs blow you off. Thoroughly sucky but it's how they are.

    In terms of getting all medicos to stop dicking you around, write down symptoms by day starting now. Write a history as you have here, but with years, months if you know them, and no commentary. Print 2 copies every time you go to see anyone, 1 for the med team & one for you to have in hand if they ask questions about entries.

    Also, take someone who believes you & cares about you to all appointments with you if at all possible. Women who do this regardless of health issue tend to get better, more thorough care. As a single woman who out herself all the way through getting a law degree, has bought all her own cars & faced down many a mechanic, bought her own house, and turns 65 in 2 hours & 10 minutes, this need to take someone along irks me no end but especially with endo, it seems necessary. In your case, it's even more important because each medico sees in your notes "her hormones need to settle." That's 100% bogus but it gives them a way to dismiss you that sounds like a medical diagnosis.

    I would start now to find a suitable endo specialist. Clearly the people you're seeing are no good at endo or whatever it is that's wrong, they do not care one whit about you, and they're unwilling to do research. Unless you find the specialist/consultant instantly and they say to wait, proceed with the laparoscopy.

    Meanwhile, talk to somebody about the anxiety. Docs have been inducing extreme anxiety in endo women for many many decades, telling us it's in our heads or, in your case, "hormones need to settle." And when the next jagoff says, "Don't worry," SPEAK UP! Ask them exactly how you're supposed to manage that, because it's been many years of worsening symptoms with zero help from the medical profession and you would have to be stupid or simple to not be worried.

    You can do this. You've survived all this BS and maintained your sense of humor. We have to get quite assertive about repro health sometimes, tho in the US, no ER ir AnE would ever lift a finger about endo/endo pain. Personally i hope that whatever is wrong with you is something more curable than endo. Finding out, tho, will help tremendously no matter the DX. As to the tilted uterus: i don't know the degree of yours but if all women with tilted wombs were infertile or unable to carry to term, at least 10% fewer humans would've been born in the history of the world. And having endo doesn't automatically mean one is infertile, either. If you can learn a way to send your thoughts to other places when all this awful stuff they've told you comes to mind, that would be great.

    Rooting for you and with you in spirit from Austin Texas

    Aitarg

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    • Posted

      Thank you for your message!

      I did forget to include my age, I have not long turned 23 so I am now in my 6th year of attempting to get an answer

      I'm hoping the appointment in August I can be assertive and say I am not leaving without an answer or appointment to be seen properly as I have tried everything!

      I think here in the UK endo is fobbed off easily as irregular unsettled hormones 😦

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  • Posted

    hi

    oh dear you are going thru it..I think you are highly likely to have endometriosis..sounds like I was..heavy bleeding pain, clots, back pain...as tgey can only confirm by having a laparoscopy..you should be being referred to a gynecologist. and that is the first thing they need to do...I had Stage 4 ending and no quality of life..I would be rushed to hospital several times a year n put on morphine.. it was horrific...I had a hysterectomy at 36..no kids..was in waiting list for Ivf .ironically came to top of list a week after my hysterectomy! ..I had got to the stage where I couldn't take any more..holidays were ruined...I would have bowel issues periods were so painful, I was permanently attacked to a hot water bottle.. even in eygypt in 50 deg heat..pains in legs and back..I ate cocodamol for fun...I had 13 laparoscopies 2 laparotomies...they open you up from hip to hip..then a total abdominal hysterectomy and a double bowel resection...that's belly button to bikini line..I look like a hot cross bun..you need this sorting asap..as it will mess with your fertility...I never stood a chance at getting pregnant...get referred to a gynae asap...and get that laparoscopy done..it will confirm it straight away..plus severity of it ..there are 4 stages...I don't want to worry you but its difficult to treat...I haz 18months of zolodex injections at one point to try n shrink it...and 16 years after the hysterectomy..I started bleeding again...mo womb no ovaries..no appendix.. all removed as stuck to other organs with endo..turns out it was endometriosis again..stuck to my bowel...I've had 6 months zolodex injections again and its stopped it..I was in HRT patches oestrogen only for years..I now have progesterone and oestrogen patches which I'm told will stop it coming back...hope you get sorted...but be firm don't be scared to ask..its your body and you know when something is wrong...good luck.

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    • Posted

      Thank you for your kind message

      My gosh it sounds like you have been through hell with yours! I'm sorry to hear the severity of your case.

      If you don't mind me asking, how long were you trying to get to the laporoscamy from the Dr's before they finally referred you?

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  • Posted

    I had problems from starting my periods at 14...went on pill at 16 to try n regulate them..I think I was 22..I was having really bad periods and my mum paid for me to go to private gynae I was living in liverpool at the time the gynae I saw referred me straight to total womens hospital as NHS shortly after her examination. they then did a laparoscopy I was 22. basically I then mives to London had another laparoscopy at st helier hospital.. then started on the long road to trying to cope with it..I finally saw a fantastic guy in mcrae dr seif..he was top of his field. over the next 12 years he tried everything even severing nerves in my stomach to help with pain.i eventually asked him to do the hysterectomy as it wasn't liveable...I've had trial drug treatment experimental treatment..several ops..pumped full of drugs..and at 36 had had enough...I was measured for a colostomy bag prior to theatre as it was a dual OP with a bowel specialist...thankfully I didn't need it..but had 2 sections cut out and rejoined...as endo has set hard...I had an horrific experience..not everyone is the same..I also had a PE post OP.. so was really poorly..mines an extreme case..but it's not something to mess with..insist on the lap..even ring and ask to be put on list for cancellations...see if they can see u sooner..as soon as you know..you can make sure u get treatment and go thru your options...you are so young..but I was like you and I wouldn't wish10 years of hell and being passed about for anything...hopefully get a good gynae..who knows about endo..if u do have it...there may be new treatments now..I'm 53..and wish I had had hysterectomy sooner..but I thought I would have kids and put it off...if I knew that I wouldn't have been able to I would had it sooner.. ring hospital tell them u will take a cancellation? if it's your 1st appt tho you may not be able to..but when you actually get a gynecologist you will be able to speak to secretary and hopefully get sorted. I had a fab relationship with my drs secretary she would always get me in to his next clinic by giving her a call. good luck .

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    • Posted

      Thank you for sharing. It sounds like you were a similar age to me when your symptoms started and progressed. You are strong for going through so much surgery at a young age. Must have been grueling.

      It is ashame they took so long to get you the right treatment, this is my main frustration with endo cases, the length of time to diagnose, often too late when diagnosed.

      I wish I had avoided all "alternate" treatments and gone straight in with a laporoscamy.

      I will update further after my hospital appointment if there is any progress

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