endometriosis... help!

faw1tytowers · 11-02-2011 11:00pm #1

I have been having pains that have been getting worse over the past year. Twice my doctor sent me to casualty and I was sent home telling me it was my uterus contracting ( I had a baby a year ago) ISnce then I have been ignoring the pains. Until now a year after giving birth the pains are so bad I will moan aloud in agony. I can only compare the pain to contractions...

Anyway so I sadly missed my last day at college and all the goodbyes cos I was in such pain today and so I went otmy doctor who said I should of had a scan and this time to not leave without a scan or swabs been takin at casualty.

So finally something got done. I seem to have all the symptoms for endometriosis and it is an illness that has been suggested I have since my early teens yet never further investigated. Just took pain killers and the pill to control. Now that I have thyroid problem I dont take the pill which I assume is now making my pains more noticable.

Anyway my quibble is this, I explained my pain and how I took a day off college because i was in crippling pain. Yesterday I doubled over in a shop the pain was so bad. At home I sometimes feel the need to get on all fours till the pain has passed, Yet today they take my swabs and tell me I will recieve an appointment in 2 weeks for a scan.

She even told me it is likely I may need key hole surgery but cant confirm until after the scan and I will have to wait a further 2 weeks to get my results and be assesed further. Is this normal? I was given a pain killer of some sort that I was told to take on day 1 to 3 of my period and that was that. Is this really as good as it gets or should I of pushed thi further. I start a new job this monday and really dont want this interfereing with my work... but it is going to right!?

Crafty-Chel · 14-02-2011 1:41am

Hiya, i was years being prodded and poked at before endo was even mentioned... they will need to do the scans first to rule out cysts and polycystic ovaries because the symptoms are very simular... if they rule out cysts then you will prob have to go for the surgery, and it will interfer with your job, i had to take two weeks off....

i never heard of endometriosis untill a year ago but i have done alot of reading up on it, (i suggest you do the same before an op) since my op iv been alot worse with pain and mood swings... the op will remove it but it will come back, its an incurable disease, the only thing i find help's is pain killers (strong ones) but im doped most of the time.... there is different hormone treatmeants but most of them have awful side effects...

for the moment theres not much you can do only wait for scan results...also if you go private you wil be seen to much quicker, its expensive tho, i think my op was about €1000...

hope some of this helped and feel free to pm if you have any questions.

faw1tytowers · 16-02-2011 12:50am

Crafty-Chel wrote: »

Hiya, i was years being prodded and poked at before endo was even mentioned... they will need to do the scans first to rule out cysts and polycystic ovaries because the symptoms are very simular... if they rule out cysts then you will prob have to go for the surgery, and it will interfer with your job, i had to take two weeks off....

i never heard of endometriosis untill a year ago but i have done alot of reading up on it, (i suggest you do the same before an op) since my op iv been alot worse with pain and mood swings... the op will remove it but it will come back, its an incurable disease, the only thing i find help's is pain killers (strong ones) but im doped most of the time.... there is different hormone treatmeants but most of them have awful side effects...

for the moment theres not much you can do only wait for scan results...also if you go private you wil be seen to much quicker, its expensive tho, i think my op was about €1000...

hope some of this helped and feel free to pm if you have any questions.

Have been looking it up , but never realised it was incurable and so will look up more. I should b having the scan within the month because they have cocked up too many times with me. Been sent up numerous times with "after pains". They tell me know I was lost in the systym. Cos I should of been referred and sent to clinic.

If you dont mind send me any info or experience you have or reccomend

I would appreciate it.

Sound Bite · 19-02-2011 11:02pm

I've been treated for endometriosis OP. I had an ultrasound, an MRI, another procedure with a camera that I cannot recall the name of & then keyhole surgery.

I used to have crippling pains, often doubled over in pain or had to lie on the floor to ease the pain, sex was very painful on occassion & I was taking constantly taking ponston which only ever helped a little.

I took a week off work after surgery. I was very sore & sleepy for the first 4 days. (Looking back, I possibly should have taken longer). I also had follow up injections which brought their own problems.

The surgery is the best thing I ever did. I have my life, my energy & my sanity back.

Good luck & if you've any other questions, feel free to ask.

hdowney · 19-02-2011 11:31pm

i have been tested for EVERYTHING else and so far nothing. i mentioned endo to my new doc and she is like nope no way i have it cos of the contraception i am on. she seemed very dismissive. i guess my thing is. i have been in serious pain for 10 yr getting worse and worse. it is nothing else. had ALL the scans. and if it is endo and i don't get diagnosed i could end up infertile. i am only 25. she said i could never find out what is wrong with me and may just settle and find some pain management! but she won't send me for the test for this at all!!!

Sound Bite · 20-02-2011 12:10am

I don't understand your docs comments about contraception. All I can tell you is that I would have been on the pill the majority of the time & suffered badly when on it but it would be worse when I stopped taking it.

From what I remember, endometrosis can only be confirmed when they perform the surgery & actually see it. If I remember correctly (& I might not because my emotions were all over the place at the time), my ultrasound showed something inclusive, the MRI showed I had a fibroid but my consultant told me the fibroid shouldn't cause all of the symptoms I had. It was only when I had the operation and laser surgery that the endometrosis was confirmed.

I had to beg for the initial referral. I had seen numerous doctors who seems to think I was complaining for the sake of it. Keep asking until you get the results you are looking for.

If you are in the west, I can PM you the name of a very good gyn.

hdowney · 20-02-2011 4:38pm

unfortunately i am in the east

my doctor says because i am on the injection, i don't ovulate, and if i don't ovulate i can't have endo.

i would love to know what she based the assumption i don't ovulate on. she didn't ask enough questions to discover wether i do or not tbh.

i wouldn't say i ovulate regularly like a woman who isn't on the injection. i mean i no longer get periods every month (was put on the injection at 14 to stop the painful periods which caused me to miss school every month) and i certainly don't get them the way i used to. but i do sometimes get a small ones, and i do notice other 'symptoms' in my body that women get a different times of the month. so i don't think my body just shut down.

i got the impression this doctor didn't like me coming in and making what she saw as my own diagnosis. well i wasn't diagnosing anything. i was just in agony AGAIN one night and i googled the pain and the reasons for it. reading through the list i was like i have been tested for that, that and that, but not endo. so i was like i wonder if this might be the cause of all the pain.

i have been in pain for so long now and would like to find out. even though it does mean an operation to see if this is what i have.

the doctor was like we could never find out what is wrong with you and you may just deal with it. well yes that is true, but i don't think it is fair to say that when you have not tested me for all the possibilites. and when she was saying to deal with it, it was like she was saying just piss off and go be in pain i don't care. no even discussion of pain management things.

i can tell you if they don't test me for endo, and then in later life i find out i did/do have it, especially if i am then infertile and wanting to have children i would be likely to hunt her down and :mad:

Chuchoter · 20-02-2011 4:42pm

Just wondering, has anyone ever had the laparoscopy, being 100% sure you had endometriosis, and then it turned out you didn't? What did you do after that?

Sound Bite · 20-02-2011 6:29pm

@hdowney: Have you been seen by a gyn. If not ask for a referral. Even go privately if that's what you need to do. It wasn't until I saw a gyn that I was taken seriously.

hdowney · 20-02-2011 7:04pm

nope haven't been seen by a gyn. haven't been referred. would love to go private but not a hope of me affording that tbh.

Sound Bite · 20-02-2011 7:12pm

You need to tell your doc that you want a referral to a gyn. I was about 15 years complaining before I got a referral. One day I just broke down in the docs office & insisted she refer me. I told her I didnt care what it cost but I needed relief from the pain.

I know in some parts of country, the wait for the public service is only marginally longer than the private system.

Tell the doc, that she has a duty to get to the bottom on your problem.

hdowney · 20-02-2011 9:20pm

i hadn't seen this doc before. i think she replaced one of the other docx in d surgery. but even breaking down in tears she seemed to think she knew best and i didn't need referring for the test. think i might go back and see this bloke doc there who is real nice and all. see what he says

squeky · 21-02-2011 4:48pm

GP's have no rights to stop you from getting a referral so push them for it and be firm with them, endometeosis can only be confirmed by having a Laproscopy procedure.

LegacyUser · 23-02-2011 10:42am

Sound Bite wrote: »

I took a week off work after surgery. I was very sore & sleepy for the first 4 days. (Looking back, I possibly should have taken longer). I also had follow up injections which brought their own problems.

The surgery is the best thing I ever did. I have my life, my energy & my sanity back.

I'm glad it went well for someone!! I had the surgery, got the diagnosis, and other than being able to point to exactly what's wrong it's made no difference to my life and the pain. He removed what he could, but of course it just came back, and he didn't recommend my having the hormone treatment. So painkillers are my friends until menopause finally arrives.

I was out of work for less than a week because I had the op on a Friday and went back to work the following Thursday (not a physical job obviously).

hdowney · 23-02-2011 11:39am

do you find that any pankillers in particular help with your pain? any that i have - over the counter types - don't seem to make a jot of difference to me

LegacyUser · 23-02-2011 3:55pm

Hey all,

I too have endo, have had 2 ops now to have it removed but it keeps coming back, like the previous poster i don't take any hormone treatments, so pain killers for me all the way.

I've lost count of the times i've had to go to a&e for pain relief, it's soul destroying as ye all probably know to be in constant pain and to watch on as other people live their lives while u sometimes just want to curl up and die.

For pain, i bring a hot water bottle everywhere, use heat patches, have taken too many drugs to remember but at the moment i take feldene when pain is bad and for when i can't stomach pills i have to use difene suppositeries (sp?) - not nice things to have to use but they seem to help with the pain.

U should ask ur gp to prescribe some pain relief, u should not have to suffer.

Ms. Koi · 27-02-2011 1:10am

@faw1tytowers
I was diagnosed last November and have suffered with pain for the last 8 years. The last year the pain just got out of control and I got fed up passing out in work and having people chaperon me in college in case I collapsed when I was on my own. You will have to have surgery because it's the only way to get diagnosed. I took a week and could probably have done with taking a couple of days extra.
As far as pain medication, it all depends on what works for you. I've moved from Feminax and increased the level of pain meds as the years have gone on. I'm actually back with my doctor in two weeks, so I'll most likely be getting an increased painkillers, as I'm still in pain.

@hdowney
You should not have to suffer alone! Go to the doctors asap and demand to be referred. It will simply take your doctor ten minutes to write the letter for referral and post it! You deserve to be seen and get an answer! If this doctor refuses, go to a different one. You have as much of a right to get seen by a gynecologist and get an answer. If you are in the east, I can pm you where I go for treatment?

Every woman who suffers will have a different reaction and different levels of pain so it is all individual. I think (I am not a medical professional) that this is why it's such a complicated condition. Some woman have no pain whereas others are in so much pain and pass out. It completely baffles me anyway!

hdowney · 27-02-2011 11:34am

yup i'm in the east. i am making an apt tomorrow to see a different doc.

Ms. Koi · 27-02-2011 2:15pm

Hope it goes well for you! Let us know how you get on
x

faw1tytowers · 28-02-2011 5:54pm

Do you only suffer pain when your period is due and have pmt or do you have continious pains? I have my clinic appointment in april.

Ms. Koi · 28-02-2011 5:58pm

I get spasms and pains all month and then just intense pain then during my period. I went to the doctors today and she gave me DF118. Very strong stuff!
There's an information day being held by endometriosis Ireland Saturday 12th March. I'm definitely going. Anyone else interested?
www.endo.ie is where I found this out

Quote from Website:

*** Welcome ***

***** Endometriosis Awareness Week 2011 *****
7th - 13th March

EAI activities for Awareness 2011 include:
Information Day
Support/Information phone line
End to Endo coffee mornings

~~~

We are delighted to announce details of our annual
Endometriosis Information Day
Saturday 12th March, 1:30 - 5pm
at the Lucan Spa Hotel

Keynote Speaker:
Dr Hugh O'Connor, Consultant Gynaecologist at The Coombe Women's Hospital and St James Hospital, Dublin.

The afternoon includes talks by two speakers who have endometriosis themselves:
Dr Tracy Dixon will speak about Endometriosis and Nutrition
Adrienne Egan will speak about Endometriosis and Mayan Abdominal Massage techniques.

The information day is open to anyone who would like to know more about endometriosis, including women who have the disease, or think they might have it, their partners, family and friends.
Attendance at the event is free of charge.
We look forward to meeting you there!

hdowney · 28-02-2011 6:22pm

oooh that looks quite interesting. mite see if i can go.

no word on the dox apt yet. keep ya posted

Netanya · 01-03-2011 8:13pm

Last year I went into hospital with internal bleeding, at the time I was put through a barrage of tests from bloods to colonoscopy to MRI's and my consultant went through a range of diagnosis which made my head spin. Day 1 was Bowel Cancer (which my uncle was just diagnosed with) or Crohns disease, Day 2 was Ulcerative Colitis and then after he couldn't get an answer he put me on antispasmodics and diagnosed me with "random internal bleeding" which is really no diagnosis at all. They also found a Hiatial Hernia during all this and I was put on zoton to control the whole not being able to swallow in the morning with out choking thing. You don't know something isn't normal when it's happened your whole life but I will say it's nice that he could give me a concrete diagnosis for something.

However due to the cramping, bowel problems and random days when I bled for no apparent reason I just couldn't do much of anything. I have gotten really really good at hiding the pain. Partly because I'm allergic to opiates so I can't really take anything so I've learned to keep moving even when my body is screaming at me to stop.

I had an out patient appointment with my specialist 3 months ago and he said that other than another barrage of the same tests there is no way for them to know what is wrong. This is when he comes out with the "Does anyone in your family have endometriosis?" Now I told him this when I was in the hospital, sweet J***S, my mother (the one who suffered it, going so far as to having a hysterectomy) was beside me when he asked the same thing 4 months before. I withheld my sarcasm and told him yes three women in my
family have it. He advises me to keep a diary of my pain etc and to go to my GP after a couple of months with the diary and see if I can get a referral to a gyn.

I suppose I have endured 13 years of pain and anguish so what the heck is a couple of more months gonna do. So I keep my records and low and behold something I already had an idea of myself, there is pattern! And the pattern seems to match my freaking cycle.

Today I went to my GP. Oh Boy!

Que 30 minutes of arguing over how I know my body pretty well and that I may need the laparoscopy (her response was "I'd prefer if you didn't get it there is no need and your body has gone through enough this year") because I really want an answer finally for why from the middle of my cycle I'm in so much pain I want to rip out my insides. She then tells me that "All girls have painful periods" So I tell her 1. I am not a girl I'm 24. 2. Does she have to feel like someone is taking a knife to her for 3 weeks of every month. She shut up
and finally consented to giving me a referral. So she says at the end of the appointment "I don't know why none of your doctors in the past couldn't connect the dots and figure out what was the problem was cause it seems pretty definite that this is the problem." like it was her f***ing idea and I hadn't just argued with her about it for half an hour.

I am so glad that I got my referral and I cannot wait to get my appointment, I'm going to prepare a document with all my symptoms so they don't side track me with the usually b******t doctors try to pull and perhaps a sign to go over my head that says I am not 16, I am 24. I may look young but I am an adult!

It's a nightmare and because I've been trying to get the right diagnosis for so long I'm worried what they'll find when they get in there.

Ms. Koi · 01-03-2011 9:46pm

Netanya you poor thing! That's so sad that you have been put through so much and are yet to get an answer. Hopefully this doctor will be able to get you sorted. Your right to keep a diary as it gives you a definite record.
I hope you get an answer soon because no one should have to suffer because of a doctor's inability to diagnose!
If you live near, you should head to the information day that I posted about earlier.

kellief x

hdowney · 01-03-2011 10:37pm

my god mine is the same. had a million and one tests to rule out the king and his wife. but the doc i go see tells me in no way can it be endo cos well it just can't. claims i don't have a cycle cos of the contraception i am on. i may not bleed in the same way as i used to, but i still have a cycle i can see all the other symptoms of your cycle. shame thing with me is i never had a regular cycle when i went on the contraception, and still don't think i do, so i am not sure keeping a diary would help. i know that there is possibly one week out of four that i am not as bad as the others, but. do you think i should keep one anyway?

Netanya · 01-03-2011 11:01pm

So I didn't even think I had a cycle because I was on the pill from 16. I was still in pain but I didn't really make a connection cause I didn't keep a calender or diary.

About two years ago I had to come off the pill due to migrane etc. I started to keep a chart then but I didn't log my pain and other symptoms until the specialist told me too and it has really helped. Not only cause it's something I can show my doctor, but for those days when your own mind or other people make you feel like it's all in your imagination.

I would say do it for your own peace of mind!

Ms. Koi · 01-03-2011 11:36pm

I have always up until last may kept a note of dates but I've been keeping track of when I faint and collapse. I'm fed up with having to be monitored. I'm currently lying in bed with a hot water bottle and going asleep! Night x

hdowney · 02-03-2011 12:00am

i find, depending on the level of pain i cannot lie in bed. (i don't mean this in a gross way!!!) - our toilet is quite low down, blame small plumber! and i find that if i just go in, put lid down and sit on toilet (fully clothed) leaning forward to sort of squish my whole front area it helps a TINY bit. like not a lot, i still am in agony, can't breath, sweating etc, but it helps a bit more than trying to lie in bed with a hot water bottle. i find if i stay in bed i start writhing, and if i am sitting in a normal chair - such as at the table - i start tapping my foot ALOT and suchlike. you have to do anything possible to make the pain even the tinest bit better.

k well i think i am gonna start having to keep a diary. at the moment i am in what can be described as the good phase if there is such a thing. i am not in the 100% pain section. i think the last day or two i have had maybe the most of 3 in the level of pain and only for short periods of time. the previous two weeks in particular though i was in complete and utter agony

Sound Bite · 02-03-2011 8:03pm

hdowney wrote: »

i find, depending on the level of pain i cannot lie in bed. (i don't mean this in a gross way!!!) - our toilet is quite low down, blame small plumber! and i find that if i just go in, put lid down and sit on toilet (fully clothed) leaning forward to sort of squish my whole front area it helps a TINY bit. like not a lot, i still am in agony, can't breath, sweating etc, but it helps a bit more than trying to lie in bed with a hot water bottle. i find if i stay in bed i start writhing, and if i am sitting in a normal chair - such as at the table - i start tapping my foot ALOT and suchlike. you have to do anything possible to make the pain even the tinest bit better.

So familiar I could have written it myself. I used to find kneeing on the floor doubled over used to help. Leaning forward/doubled over position helps take the very sharp edge of the pain but no more than that. Lying on the floor on my stomach also used to help.

When you find yourself getting hot, sweaty and itchy, I used to find putting a cold compress on my forehead helped. Can't remember the name of the owns I used but they're for kids with a fever but they really help get rid of the burning up feeling.

None of this is medical advice & may or may not be good for you, but it's just what I used to do. Good luck

faw1tytowers · 02-03-2011 9:48pm

Sound Bite wrote: »

So familiar I could have written it myself. I used to find kneeing on the floor doubled over used to help. Leaning forward/doubled over position helps take the very sharp edge of the pain but no more than that. Lying on the floor on my stomach also used to help.

When you find yourself getting hot, sweaty and itchy, I used to find putting a cold compress on my forehead helped. Can't remember the name of the owns I used but they're for kids with a fever but they really help get rid of the burning up feeling.

None of this is medical advice & may or may not be good for you, but it's just what I used to do. Good luck

|Kneeling on all fours and rocking a but like giving birth thats how I do it too. And sometimes I find it feels like giving birth in particular the placenta stage!

faw1tytowers · 02-03-2011 9:49pm

kellief wrote: »

I get spasms and pains all month and then just intense pain then during my period. I went to the doctors today and she gave me DF118. Very strong stuff!
There's an information day being held by endometriosis Ireland Saturday 12th March. I'm definitely going. Anyone else interested?
www.endo.ie is where I found this out

Quote from Website:

*** Welcome ***
***** Endometriosis Awareness Week 2011 *****
7th - 13th March

EAI activities for Awareness 2011 include:
Information Day
Support/Information phone line
End to Endo coffee mornings

~~~

We are delighted to announce details of our annual
Endometriosis Information Day
Saturday 12th March, 1:30 - 5pm
at the Lucan Spa Hotel

Keynote Speaker:
Dr Hugh O'Connor, Consultant Gynaecologist at The Coombe Women's Hospital and St James Hospital, Dublin.

The afternoon includes talks by two speakers who have endometriosis themselves:
Dr Tracy Dixon will speak about Endometriosis and Nutrition
Adrienne Egan will speak about Endometriosis and Mayan Abdominal Massage techniques.

The information day is open to anyone who would like to know more about endometriosis, including women who have the disease, or think they might have it, their partners, family and friends.
Attendance at the event is free of charge.
We look forward to meeting you there!

Thanks for this I have left a message with them and hope to get stuff in the chemist where i work and have a info day.

endometriosis... help!

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