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info on endometriosis

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mags89x
mags89x

Hi All,

Im unsure about this so any info would be great. I have doctors on Wednesday for a check up and referral as they are testing me for endometriosis.

Im just wondering if anyone out there has any info into what symptoms you's had before being diagnosed.

Ive been on the contraceptive pill for about 8 years, never any problems, until earlier this year my periods became irregular, blood was almost black and the heaviest ever. also really loose bowel movements before during and after period week redface ive always had really light periods but since beginning of year, been irregular, heavy and 'really' painful. never been bothered with this before. I also have really bad cramping in abdomen and lower back and shooting pains down my legs, for first time this month i was in bed for 10 days! 

ive been to doctor countless times, always just given pain relief but demanded that this get further testing. Ive also been quite sore down below during and after sex. same partner for 12 years and always been fine, until the past few months, after sex get a burning feeling and really swollen and red, both been tested for sti/std as i jumped to conclusions that he'd been a straying rolleyes but no both came back fine. 

im sorry for going into detail but id just like to know that im not alone in this lol

any info appreciated!

 

0 likes, 15 replies

15 Replies

  • aitarg35939
    aitarg35939 mags89x

    Posted

    You are not alone, Mags. And don't worry, most of us have experienced nightmarish symptoms of all sorts. This is one place where no one is scared away by graphic descriptions if for no other reason than because words in print can't hurt us the way the disease does.

    I'm sure some of the younger women will chime in soon especially as to current testing. When you say you're going to be tested, I hope that no one has led you to think that there's a blood or urine test? There are some newer procedures with (I think) an internal (vaginal) ultrasound and maybe very special MRIs. If those don't work and symptoms continue there's another test.

    When it comes to sex, yikes! I've got no suggestions except possibly a good condom with tons of lubricant might leave you less sore, etc. May not be as much fun but ,,, also, many of us have spots on our bladders so it's extra important to empty the bladder just before and just after sex. Not so romantic, I know, and my ex only quit cracking jokes about this after about 14 years. Even if this doesn't help with painful sex, it will cut the risk of UTIs.

    I hope the docs can help you. You're in my prayers.

    Aitarg

    • mags89x
      mags89x aitarg35939

      Posted

      Thank you for your reply,

      ive got docs on wed so will let you know how it goes, i think he explained that a laporoscopy would be needed. so fingers crossed i get a result soon xx

  • tashakawaii
    tashakawaii mags89x

    Posted

    This sounds like the same sort of problem my girlfriend has.

    She was on the pill for only a few months when suddenly she was getting abdominal pain, heavy, painful periods etc.

    A few years on now and the pain is worse, shes getting the constant loose bowel movements, causing all sorts of problems down there as well. She gets pain after sex, I was led to believe she may have ovarian cysts, but now I'm thinking maybe Endometriosis instead. She's had an external and internal ultrasound, we're waiting on getting a blood test appointment but it doesn't help that no pain killers are touching it, and im having to rely on all sorts of remedies for the pain, and there's no sex life anymore (not that i'm relaxed enough for that anyway, i'm too worried!).

    Just need peace of mind that she's not alone sad

    • mags89x
      mags89x tashakawaii

      Posted

      hi tashakawaii, i have the doctors today, exact same as me, ive had both internal and external ultrasounds too, was also lead to believe cysts and was sent for lazer treatment, no help though.

      Ill let you know how i get on today and hopefully get to the bottom of it. shes definetly not alone though biggrin

    • tashakawaii
      tashakawaii mags89x

      Posted

      Oh it's so good to hear that you're getting to the bottom of it. I only hope we get the same soon too! Good luck for today x

    • mags89x
      mags89x tashakawaii

      Posted

      hi again,

      yeah, trust me its taken umpteen visits to the doctors and in the end had to demand further testing.

      so today was interesting, i had a further examination and they have come to several conclusions! twisted that its actually vessels on the outside of the cervix causing all these problems aka 'ectropion' This is when the glandular tissue of the cervix covers a large portion of the outside of the cervix.,It is common in adolescents, pregnant women, and women on oral contraceptives. rolleyes

      This is the disgnosis they are sticking with for the next 3 months until, yes, you guessed it, im referred for further testing frown another internal and external ultrasound, another cervical screen and a laporoscopy.

      The only good thing from today is they have given a 3 month date for all of the above to be carried out and test results back. Not good considering the pain and non existent sex life right enough but i suppose im getting there slowly for results.

      They also changed my contraceptive pill today *pointless i know as cant get jiggy with it due to this* and prescribed mefenamic acid to stop pain during mother natures week and also tranexamic acid capsules to take to lower blood flow.

      Sorry to ramble on and not give an exact answer but i hope any info here might help, tell her to go to docs like a woman on a mission and refuse to leave until a referral has been made for further testing cheesygrin

      Hope all goes well, let me know how she gets on x

    • tashakawaii
      tashakawaii mags89x

      Posted

      I only wish it was that simple sad

      She has agoraphobia and severe social anxiety so it's a real battle to get her out of the house, but hopefully she will go for the blood test next time the menstrual comes round.

      I feel ya with the whole non existent sex life, it really sucks and puts a bit of a strain on the relationship. No woman should have to go through this!

      I will let you know x Thank you smile

    • aitarg35939
      aitarg35939 mags89x

      Posted

      Hi Mags

      I'm glad doctors have a plan for you now but I'm not pleased that they're making you wait another 3 months. Are you in the UK or stateside?

      Aitarg

    • mags89x
      mags89x tashakawaii

      Posted

      Hi,

      Sorry for late reply, had a bit of a sore off day after docs yesterday.

      Aw bless her, I hope you get things sorted soon. Maybe even request a home visit? Just a thought.

      Yeah please keep me informed if you have any updates.

      Hope you both get some answers soon x

    • mags89x
      mags89x aitarg35939

      Posted

      hi,

      I'm in UK. They have given a 3 month target for all tests and results and hopefully a conclusion to all this misery.

      I will keep posting on here results and tests. As I know how freaked I am with all this thinking I was alone. No idea how relieved I was to find it wasn't just me lol.

      I know it's quite a bit of a timescale to get results but I'm just happy there actually doing tests now.

      Will keep you posted! X

    • tashakawaii
      tashakawaii mags89x

      Posted

      Yeah tried all that, they won't do home visits unfortunately. sad

    • mags89x
      mags89x tashakawaii

      Posted

      Shame sad

      I'll keep posting incase anything helps.

      All the best for both of you x

    • mags89x
      mags89x

      Posted

      Hi, been a while but was unfortunately taken to hospital due to pain sad was given a laroscopy under general anaesthetic and can confirm endometriosis diagnosis. *sigh*

      If only they'd have taken me seriously sooner and referred me over a year and a half ago things might not be so bad.

      After diagnosis was a bit daunting if im honest,waiting on the consultant for the answers of what they can do. there i am in my hospital gown and in walks 4 doctors and a gynaecologist all looking at the ground.

      Id prepared myself for the worst but was told that they are going ahead with a Laporotomy on 19th August. Not the worst case scenario but still a bit daunting.( If anyone has any info on this it would be greatly appreciated)

      Was told that its quite straight forward and they will remove what they can of the endometriosis tissue before ''considering other options'' frown WTF!

      When i enquired i was more or less ignored and told that 'we' would take it one step at a time. 

      Thats all ive got so far folks, i will keep you all updated on my own experience of this cheesygrin

      *LIFE IS LIKE A CAMERA....FOCUS ON WHATS IMPORTANT.....CAPTURE THE GOOD MOMENTS.....DEVELOP FROM THE NEGATIVES......AND IF THINGS DONT WORK OUT....TAKE ANOTHER SHOT!!* biggrin

       

    • aitarg35939
      aitarg35939 mags89x

      Posted

      Hi Mags

      Well, at least you know now, and, taking a cue from your camera quote as I'd never say this otherwise to someone in your position, there might've been worse results I think.

      Do you want to know what the downward gazes & "let's take it one step at a time" were about or would you rather do one step at a time? No judgment either way, people fall into one of the 2 camps except I'm halfway between (wanting info on endo, lung issues & and autoimmune disease but wanting no more details on my gut or my thyroid nodules b/c they ain't buggin' me).

    • tashakawaii
      tashakawaii mags89x

      Posted

      Hey

      Good to know you're finally getting to the bottom of it!

      We're still waiting on that blood teat but we moved recently so need to register at the new Dr's.

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