15 days of bleeding, will it ever end???

Unreg Today

Morning all,

i've posted here before about my endometriosis but got no replies, i'm obviously the only one in this country with this damn disease. I'm not expecting anyone to reply this time either cos no one seems to know anythin about it.

i've had this disease for years but got diagnosed last year, i've had constant pain for years, wasted i dunno how many thousand euro going to see doctors, consultants, chemists and have had no relief.

the latest, i went to my gp in dec as i couldn't put up with the pain and trips to the a&e every month, he suggested i go on th pill for 6 months with no breaks to stop my periods.

I'm now 15 days into my 2nd pack and have been bleeding for the past 15 days!!! what is the point??? why are these doctors making millions out of us but being absolutely no help. i feel like i've no where to turn anymore, just dunno what to do.

sorry for ranting but i'm at my wits end, tears streaming down my face as i'm typing this

mike65

Hi

Sounds like what you need first and foremost is to be able to talk to other who suffer this condtion and knowledge is power. Have you tried Endometriosis-uk support group?

Giggles1982

Sorry if this is obvious but have you attended specialists ie in Rotunda or Holles street etc ? These should be the places that know the condition inside out and treatments to try , rather than a GP who might not be so up to date . I don't suffer from it myself but I have a close friend who has suffered, and my mam.
My friend attended Rotunda for numerous procedures which eased the symptoms, whereas my mother constantly bled from may to sept and got so fed up she demanded a hysterectomy. Radical I know but she was finished having children obviously ( i'm nearly 30 ) and didnt like their other option , the coil.
Very best of luck I hope you get the treatment you need .

ascuteasabutton

Unreg Today wrote: »

Morning all,

i've posted here before about my endometriosis but got no replies, i'm obviously the only one in this country with this damn disease. I'm not expecting anyone to reply this time either cos no one seems to know anythin about it.

i've had this disease for years but got diagnosed last year, i've had constant pain for years, wasted i dunno how many thousand euro going to see doctors, consultants, chemists and have had no relief.

the latest, i went to my gp in dec as i couldn't put up with the pain and trips to the a&e every month, he suggested i go on th pill for 6 months with no breaks to stop my periods.

I'm now 15 days into my 2nd pack and have been bleeding for the past 15 days!!! what is the point??? why are these doctors making millions out of us but being absolutely no help. i feel like i've no where to turn anymore, just dunno what to do.

sorry for ranting but i'm at my wits end, tears streaming down my face as i'm typing this

Hi so sorry to hear that you are suffering..just a quick question, have you had the endometrosis removed or are they trying other treatments before they remove it?

I was diagnoised with severe endometrosis last August after 3 and a half years of what you are going through now,I had a laparoscopy in September to remove it and for a month was pain free for the first time in years, however over xmas the pain returned as did the endometrosis so I am now looking for other methods to beat it!

Would you consider alternative treatments such as acupuncture? On my last visit my gynecologist suggested Acupuncture as well as the medication I am taking, it apparently works wonders for the pain and also helps build energy levels too. I've only just started it so I can't comment yet on whether it is helping!

I can totally relate to how you are feeling,if you want to PM me for a chat anytime please do,I have found from research that it is a more common disease than I first realised but there is little known about it and there is no cure we just have to find a treatment that works best for us and that can limit the pain to let us live our lives as best we can!

If you feel that your consultant isn't doing enough to help you I can highly recommend mine just PM me and ill send you the details.


Hugs and Kisses and hope you feel better soon

Unreg Today

Thanks everyone for the replies, sorry my original post was such a rant but some days it gets to me more than others.

I have been diagnosed with endo last year and have had the endo burnt away, however there was no improvement with pain. I've been to see numerous gps, consultants and yeh i've tried accupuncture but unfortunately nothing has helped.

I'm now taking microlite continuously since dec 09 and as i mentioned earlier have been bleeding as if i have my period, not to mention the cramps for the last.. over 2 wks now! I know i should go back to my gp but i feel like i'm throwing away my money and seeing no results and in this current climate i'm not really in a position to be paying out €60 each visit.

I really do appreciate any suggestions or advice as to be honest i'm desperate and will try anything

Itsjustmeagain

Unreg Today wrote: »

Morning all,

i've posted here before about my endometriosis but got no replies, i'm obviously the only one in this country with this damn disease. I'm not expecting anyone to reply this time either cos no one seems to know anythin about it.

i've had this disease for years but got diagnosed last year, i've had constant pain for years, wasted i dunno how many thousand euro going to see doctors, consultants, chemists and have had no relief.

the latest, i went to my gp in dec as i couldn't put up with the pain and trips to the a&e every month, he suggested i go on th pill for 6 months with no breaks to stop my periods.

I'm now 15 days into my 2nd pack and have been bleeding for the past 15 days!!! what is the point??? why are these doctors making millions out of us but being absolutely no help. i feel like i've no where to turn anymore, just dunno what to do.

sorry for ranting but i'm at my wits end, tears streaming down my face as i'm typing this

When I read this I thought someone had posted this for me. I feel like im the only one in the world that has had anything like this. I started bleeding back in May after 3 months and several trips to my gp and A&E I was given a D&C. My periods stopped for a month and then came back. Its now been 3 months again of heavy bleeding. So in other words in the last 7 months I have had one month of no periods. They don't know whats wrong with me and don't seem to care. I just said i'd let you know that your not alone even though it feels that way.

BigBelly

Your GP shouldn't be charging you full price if you are going back to him with the same problem all the time. If I go to my gp for consecutive visits with the same problem I'm charged as normal the first time and €15 for any visit after that until it's rectified.

Would you consider contacting fertility clinics for help?

I'm sure you have been firm with your GP before and if you're not getting anywhere with him I would recommend changing to someone else until you're happy with the treatment you're getting.

Mollywolly

I went through exactly the same thing about five years ago. I was bleeding non-stop for about 10 months and tried everything. The pain was unbelievable and I got sent home from work several times because I just couldn't stand up. So I understand what you're going through and the pain that you're suffering.

My GP gave me tablets to stop it - they didn't work. Then I was recommended to a Gynae and he suggested a D&C, which worked for a while, but the bleeding came back with a vengeance! As I'm a lady of a certain age *cough* it was recommended to me that I go for a hysterectomy and I couldn't understand why they didn't offer that choice to me in the first place

Anyhoo, to cut a very long story short - had to have a full hysterectomy and finally got my life back! Oh, and as an added bonus, seemed to have side-stepped the menopause too

Moral of the story? Depending on your age, OP, I would recommend going for the biggie. If you're too young, then you must talk to your GP or your Consultant and explain how bad things are. They can advise you on what's best for you.

Best of luck.

dragona

Endometriosis can return even after a hysterectomy, unfortunately.

Itsjustmeagain

Im only 28 years old and am married two years. My GP says that the specialist is the one that I need to be talking to now but I can never get an appointment cause the silly little b*tch that answers the phone doesn't seem to know what im trying to say. I think when im finally Anemic then they'll do something.

LegacyUser

Thanks all for the replies and suggestions, i really appreciate people taking the time out to reply to my manic rant!!

Itsjustmeagain wrote: »

Im only 28 years old and am married two years. My GP says that the specialist is the one that I need to be talking to now but I can never get an appointment cause the silly little b*tch that answers the phone doesn't seem to know what im trying to say. I think when im finally Anemic then they'll do something.

I completely know how u feel, to be honest i've kinda given up on doctors, gynae and the like, i've had a lap, a d&c and had the neck of my womb stretched but unfortunatly nothing has help.

I rang the secretary of the consultant who operated on me a few months back and was told "oh i'm sorry i wouldn't have an appointment to see Mr blah blah until" and gave me a date 2 and a half months later!!! This was the point i went to my gp who put me on this damn pill. I'm still bleeding, i've lost count how many days it is now.

I honestly don't see what else i can do, i'm only 29, single with no kids, i just can't see how i'm supposed to cope with the future.

There is absolutely NO HELP for women like us and the sooner we come to terms with this the better, we are just supposed to put up with the constant pain and get on with our lives... apparently!

Unreg Today

Hey all,

I posted a reply earlier but it hasn't appeared, not to worry!

I'd just like to say thanks to everyone for the replies, it's good to know i'm not alone, it's a horrible disease to have and i sympathise with any other women that are out there suffering like me.

itsjustmeagain - i'm so sorry to hear ur having trouble too, i completely understand about trying to get an appointment to try get help. I called my consultants office a few months back and the "lady" on the desk told me "i'm sorry but i wouldn't have a free appointment to see Mr whatever..." and gave me a date for 2 and a half months later!!

It's a joke, the guy has operated on me twice but when i want him to follow up on his work when it clearly hasn't worked i get fobbed off, it's complete rubbish. I have never gone back to see him.

To be honest i'm at the stage where i'm so close to giving up on all the doctor and hospital visits, but where do i turn then?? Am i destined to be in pain till menopause?? Not to mention will i ever be able to have kids

LegacyUser

I don't have endometriosis...but I do have crazy cycles (due do hyperthyroidism/Grave's Disease), so I can empathise in so many ways!

I can go from a 14 day cycle....i.e 7 days on, 7 day off

to a 50 day cycle...i.ie completely missing a period althogether. Had those a few times now.

...and the longest period I've had in the last 18 months was non-stop for 24 days...I (half) joked with my GP that time that if it was possible to have an elective hysterectomy could I be first in the queue please...

Totally unpredictable and completely does my head in. I have learnt the hard way to carry 'supplies' with me at all times....just because I finished my period the other day doesn't mean it won't come back ...at any time.

And heavy...oh boy, can they be heavy. A few really bad periods where I would be going through super plus "elephant size" tampons (and swamping the 'back-up' panty liner in less than half an hour...my GP called it 'flooding'...I called it Niagara!

And I can also predict the blood clots by the variations in period pain....not nice.

I have routine bloodtests every month...and my GP keeps dong extra bloods for hormone testing, but they always seem to come up OK....heavy/irregular periods are meant to be a symptom of hyperthyroidism, but even my Endocrinologist is at a loss to explain why mine are SO crazy...

so please don't feel alone...there are others out here in forum land who aren't necessairly going through endometriosis, but are stuck in our own 'cycle' hell for other reasons.


With regard to the 'unreg' person having issues with their consultant...ask your GP to refer you to another one.
My old GP referred me to the 'specialist' at my nearest hospital, and he was the most unpleasant & obnoxious waste of time that I have ever come across. My old GP was a bit of a battleaxe too. So instead, I stuck my head in the sand and ignored my increasing symptoms for too long, almost fatally too long!

I found a new GP, we clicked straight away, and I wouldn't be lying if I said that she saved my life, literally! Anyway, after hearing my previous 'specialist' horror story she referred me to another Endocrinologist. The hospital is further away, but the treatment I'm receiving is far, far superior...if it doesn't click with you and your consultant don't be afraid to ask for another referral...and if your GP won't oblige, find another one! Your're paying them to provide a service! If they're not working *with* you, then you may as well not bother. This is *YOUR* health and *YOUR* life, so make sure you getting the best treatment you can, even if it means travelling further etc.!

Tikkal

Try out either one of these tinctures:-

http://www.karmahealing.com/refresh.html

http://www.karmahealing.com/pcos.html

Queen-Mise

Op - are you not entitled to a full medical card because of a health condition. I would be inclined to apply and even if they gave you doctor only would save you 60 a pop for the doctor.

The condition I know nothing about but my sympathies to you. Sounds horrendous.

dragona

You describe my periods (formerly) exactly, minus the crippling, excruciating, debilitating, mind-blowing,cramping, agonising pain. Horrendous does not begin to describe it - unfortunately, or rather fortunately for me, hysterectomy was my only option, and the relief has been wonderful - mind you, I was older probably(44 ) and my family complete. I thank my lucky stars each day that I made the right decision, and my only regret is that I didn't do it years ago I know for a fact though, that endo is totally different (I had adenomyosis) and may recur even after a hysterectomy.

spurious

I have a severe thyroid condition too (Hashimoto's) and while I was lucky not to have endometriosis, I had completely painless flooding (which in a way sounds better but isn't, because you never really know what's going on 'down there' until you go to stand up). It went on for four months non-stop at one stage.

We tried lots of things, including norethisterone and at one stage some type of haeomophilia drug - nothing really worked until I got a Mirena IUS. It stopped the bleeding dead in January 2007.

It may be an option for some people.

Eliza Lynch

I am just posting to sympathise with you, I had a similiar problem (although much less severe admitedly) with bleeding when I was in my teens, the male doctor I visited was unhelpful and almost dismissive even when I said I was bleeding and fainting, I think his word for my symptoms was "normal". As a teenager I was embarrassed about my body and unsure, I was very upset with his reaction and have since become quite annoyed about the treatment of womens health in this country. So I can understand how upsetting the whole process is, I hope that you find help.
Maybe explain to your doctor that you can no longer afford to pay€60 each time esp when his help is not having results, any resonable person would understand this.
If nothing else try a female doctor...its sexist but they may have a better understanding from first hand experiences or even just because they have more female patients?
I truely hope you find help.
Best of luck with every thing xx

Unreg Today

First of all i'd like to say thanks so much for all the replies, in a way it's good to know i'm not alone.

I called my gp last friday to explain about the constant bleeding and he said "sur stick with it for another month and we'll see what happens", so i asked him would he refer me to a consultant that deals with endometriosis. He said he'll send a letter but i'm not holding my breath.

My lastest update however is possibly worse than in my original post, the bleeding has slowed a little (thank god), alas not as heavy and painful but now i'm having terrible night sweats, woke up 4 nights last week absolutely freezing but soaked to the skin with sweat, had to get up and change pj's, bed clothes, the lot, this is continuing on this week and have woken up mon and tues nights also. Pretty tiring working all day and then going home to wash and dry bedclothes :mad:

Really think this pill isn't working for me, the main reason i'm on it is to stop my periods and the pain associated with them, doesn't seem to be doing the job

Again i'd just like to say thanks to ye all for taking the time to reply, i really appreciate all the kind words and suggestions.

LegacyUser

spurious wrote: »

I have a severe thyroid condition too (Hashimoto's) and while I was lucky not to have endometriosis, I had completely painless flooding (which in a way sounds better but isn't, because you never really know what's going on 'down there' until you go to stand up).

Ooooh yeah...forgot that one! had that for a few months...when I went hypo for a while last year...I kept complaining to my GP that I was having no period pains....at all, not even a hint of a cramp, either before, during or after...she laughed and said "don't complain" (after she'd drawn more blood for hormone testing I should add in her defense)....but it was really 'eerie' and odd....can't describe it, just felt wrong...and as you say, it made the unpredictable nightmare even more unpredictable...

lynnsback

Have you ever tried any dietary solutions for this? Like many, many people find relief with endo by cutting out gluten, dairy, sugar, caffeine etc. I am a Coeliac and I think anyone who has an autoimmune condition such as endo should give a gluten free diet a trial. Pm me anytime if you want to chat about a gluten free diet.

sam34

Unreg Today wrote: »

My lastest update however is possibly worse than in my original post, the bleeding has slowed a little (thank god), alas not as heavy and painful but now i'm having terrible night sweats, woke up 4 nights last week absolutely freezing but soaked to the skin with sweat, had to get up and change pj's, bed clothes, the lot, this is continuing on this week and have woken up mon and tues nights also. Pretty tiring working all day and then going home to wash and dry bedclothes :mad:

unreg today, as the night sweats are a new symptom, i really recommend you get them checked out, as there are a lot of potential causes.

they may not be a part of your original condition, and likewise may not be a side effect, so its best be safe and get them investigated.

good luck

tinyfox

I'm so thankful I found this thread, like others I thought I was only one in the country with this. I have been preliminarily diagnosed with endo only in recent months but have been suffering for longer.

Also tried the pill, drugs, alternative treatments and nothing stops the mind-numbing pain.

OP I have a tentative suggestion, would you consider going on the pill injection. It did wonders for my period (after the initial month of bleeding before my body calmed down) and therefore reduced the severity of the pain to a manageable level. It was the best solution I found so far for endo but of course there are side effects. If your planning on having children anytime in the next 2 years i'd stay away as it can take a while for your body to re-adjust after stopping (took nearly 6 months before proper flow returned for me) also it can cause weight loss/gain.

Personally I stopped taking it as I was losing weight from a loss of appetite but I do know a few people who have been on it a while and they have no problems.

If its something you want to talk more abut feel free to PM me and fill you in as much as I can.

phoebe!

there is a support group for women with endometriosis in Ireland, the website is www.endo.ie I was diagnosed with endo a good few years ago and at the time had awful periods. The only thing I have found useful is diet change. I have tried many different things, meds, accupuncture, etc Exercise can also help but that can be a catch 22 because when you need to go for that walk you are so drained! I also found yoga good. I had a really good teacher and she gave me a handout with moves that easy the pain. At the moment I have pain about 2 days a month when I take ponston. The months when I don't eat as well I really notice the difference. There is a good book by Dianne Mills, Endometriosis a key to healing through nutrition. When I started changing my diet I lost 2 stone and I think loosing that extra weight also helps.
I just though I would let you know there are lots of us out there and there are things that can help, and for me the things that helped didn't involve doctors!

chillmad

mod snip-

please dont give advice on prescription medication, particularly advice that is contrary to the recommended way to take that medication

Unreg Today

hey all,

thanks again for the replies.

i went to see a new consultant last friday, when she asked me what brought me to see her, i told her endo and she replied "get pregnant", she said she didn't think another lap was an option seeing as the previous one didn't help with pain at all. i told her all about the negative effects the pill is having on me and she says yes there are side effects with all pills, but i'll change urs and see how u get on :mad: she has now put me on yaz, when i googled it some of the side effects are crazy and i've decided not to take the pill anymore, i'll just have to live with the pain

i feel like it was a total waste of time and money, i took a day off work to be told get pregnant and get a new pill prescription which i could've got from my gp, it's so disheartening i came out in tears, i feel like there's no where to turn.

thanks for the suggestion of endo.ie but tbh i feel it's a bit cheeky to expect women who are in dire need of help to pay a membership fee. i've no problem with making a donation but i feel in a way it's exploiting sick women.

I am thinking about chinese medicine and would love to hear if anyone knows anything about it as i'm clueless!

mike65

I take two pills everyday, both of them have a list of side effects as long as your arm but I don't suffer any of them. They have to list side effects even if the chance of suffering any one of them is 1000/1. Take the new pill and see what happens.

Unreg Today

mike65 wrote: »

I take two pills everyday, both of them have a list of side effects as long as your arm but I don't suffer any of them. They have to list side effects even if the chance of suffering any one of them is 1000/1. Take the new pill and see what happens.

thanks for the reply mike65, however i'm on the lowest dose of the pill at the moment and suffering terrible side effects.

i haven't slept a full night through since i started taking this pill 3 MONTHS AGO, waking up 2 -3 times a night to change pj's and bed clothes. i've put on weight, my moods are crazy, could burst into tears if i dropped my pen on the floor. i don't know about u but i work full time in a very busy job and need to get my sleep.

so excuse me if i'm not jumping at the chance to "see what happens", if u actually took the time to google the pill "yaz" u'd see there are many terrible side effects i.e blood clots, stroke and possible heart attack. i am aware the chances are rare but i'm also a smoker so according to my consultant have a much greater risk of clots etc.

as in my earlier post if anyone has any experience with chinese medicine please can you advise