endometriosis... help!

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!!!

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:

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.

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

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.

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?

yes we should meet up if we are able there. wonder how we would do it though? be nice to meet the people who have been so nice on here

i'm hoping to see my doctor (different one) next week and ask for a referral so here's hoping.

My boyfriend came across this thread and told me to have a look. Its the first ive heard of the conference but will definetly attend as i think it will be very informative.

I was first diagnosed with endometriosis in 2001 at the age of 14, prior to that i had been attending a gyn since 1999 i first went to my own gp who referred me on straight away, i got my periods in 1998 and by early 1999 i was constantly bleeding and in absolute agony, i had scans and a d&c which gave no indication of what the problem was so i was put on the pill along with a steroid tablet to ease the pain, like others i would be doubled up in pain wouldn’t be able to walk and had to give up swimming competitively and playing sport for a few years, nothing eased the pain, i was collapsing and missed an awful lot of school. My gyn decided that in Jan 2001 she tried everything to ease my pain but the only option was a laparoscopy, so i had this done and they diagnosed endometriosis and explained what it was, they said the reason it took 3 years to diagnose was that i was very young to have it. so in 2001 they cleared what they could and for the next 3 years i was taking difene, with tylex and still bleeding very heavily for two-three weeks every month and in agony, ive never experienced pain like it, before my second laparoscopy i was put on an injection once every 3months for 6 months, this was like a menopause injection which basically put me through menopause, i was about 16 and in 5th year in school, my hormones were all over the place i was getting hot flushes, i was so moody and no one understood why and basically taught i was a troubled teenager and that i needed to snap out of the phase i was in, it was awful. I had my second op in June 2004, 5 days after i finished my leaving cert, again they cleared what was there, this time it was quite successful, i was taking painkillers when needed but my situation started to improve, i wasnt bleeding for as long and the pain wasnt as severe as before, i was put on the evra patch (which is a transdermal contraception patch). With the last op to clear the endo and this patch i rarely suffered, i was discharged from the gyn and the hosp in Oct 2006 and didn’t suffer (bar the normal period pain) again until April 2010 when i start to get really bad pains in my back and around my hips and heavy painful periods which i hadn’t experienced since 2004. I went to my doc and told him i taught it may be the endo coming back so without hesitation he referred me to my gyn again, it took 6months for the appt but i got there eventually. i explained my symptoms and without any delay my gyn said she would carry out another op to see if the endo had come back. I had my 3rd op in Jan of this year, it had grown back and they cleared what was there. I was sore for a few days but was back running around training exactly two weeks after the surgery.

After the surgery my own gyn was on call so a different guy came around to discuss what they had done and what they found, as ive done a lot of reading up on endometriosis he didn’t have to explain much but what he did say was that if i was planning on having a baby i should go back and have the procedure done again to improve my chances, i was back with my gyn for a follow up appt on Monday and i told her what the other doctor had said, she was very shocked, she said there is no way they would carry out the procedure before i start trying as its too invasive and that if i was trying for 6-12 months without success they would then look at my ovaries and tubes before considering doing another op, she said that my tubes and ovaries where clear and that she couldn’t see there been too much of a problem with me conceiving, i was delighted to hear that as for the last 10 years all ive ever heard is that it can be very difficult to conceive and that i would more than likely have problems. So it was nice to hear some positive feedback (obv i won’t know until i do start trying) and i don’t plan on trying for a baby for another 2-3 years but it made me feel more positive. She also informed me that pregnancy can be a cure for endometriosis

I have read through all of your posts and i can relate to all of you, ive been there and understand what your going through no one will understand unless they have suffered what we have, for the women that have not been referred demand a referral from your gp its your right.
I cant understand how your gp can say there is no way you could have endometriosis as your not ovulating, you ovulated when you first got your periods so there for you could have it since then without suffering and only suffer later on.

I really hope you guys get sorted and can get on with your lives sooner rather than later.

Hi faw1tytowers, it's very positive to hear you have two children, but obv it hasn't been a cure for you. I hope you get sorted in the clinic, I feel quite lucky after reading all the above posts even though it took 3years to diagnose I feel I was looked after quite well, and I was public, I never went private. I visited my gyne every few weeks, although when I was very bad there was nothing that releived the pain instantly. I really hope they can do something for you and do it soon, as I knOw how dibilitating it is.

i was there too. twas a LONG day. found it very hard cos i was so tired.

a lot of the foods she said to avoid if possible i already do cos i found they affected me quite a bit. particularly dairy. i was wondering why she said dairy was on the not good list, but then put pro biotic yoghurt on the good list!!! i know it was for the pro biotic but it is still dairy!!!

i am going to arrange an apt with my doc tomorrow and demand to be referred to a gynae. i was also thinking of changing the contraception i am on - was put on one type when i was fifteen to control painful periods!!!!! and for a while it worked, but it no longer does control pain, and i have breakthrough bleeding now too. i was wondering if going on a different one might help.

very informative though, although could have done without the docx vids!

Hello ladies,
I am a long time sufferer of Endo and it has recently come to a head following a laparoscopy last Friday.
Here's a brief history.........
Always had heavy and painful periods. Married in 2001 and started ttc in 2002. Got pregnant quickly but sadly m/c at 6 weeks. Had a d&c and no mention of endo. The same thing happened in 2004 - m/c at 6 weeks again, d&c again and no mention of endo.
Gynae put me on clomid for 6 months and that made me worse than ever!
Started with Napro in 2005 and had a lap in March 2006. He told me I had endo but nothing major!!! No luck with drugs (hormone levels were not improving) or ttc in a year so had another lap in Feb07 with a different surgeon. Woke up to be told I had severe endo and had to go back in May 2007 for a laparotomy. Major surgery but 6 months after that we (with Napro) found the drug that worked for me and 5 month ttc I was pregnant and had my little boy in April 09!
So now, we are back on the ttc road trying for number 2. This resulted in being referred back to my wonderful surgeon and had a lap last Friday. My endo is worse than ever and my entire right side is destroyed. He wants me to come back again for another laparotomy and removal of my right ovary.
I trust him completely - he got my little boy here, but I'm a bit daunted by the whole thing.
Endo is genetic and my sister has had similar problems. She lost a tube but has managed to have a little girl through IVF. She is now also trying again and is about to embark on another bout of IVF.
I also started on Cyclokapron and Ponstan Forte a few years ago to help with my periods and I must say they changed my life. My periods are much more manageable these days. On the subject of diet and nutrition - I have been told to stay off dairy and increase intake of Vit D 3 and Omega 3 Fish Oils. My sister was told the same. Diet really makes a difference. (I didn't stick to it after I had my little boy and this is why my endo has come back so aggresively!)
Anyway, it's good to know there are others out there with similar problems and through this thread we can support each other.

hi all. Just found this thread, it's nice to read people stories.

I've just yesterday had an appointment with my college GP (seriously lovely woman!) who I have been going to on and off for 2 years about stomach issues. I've always had bad stomach problems, since about 12 (I'm 28 now) where it would literally feel like someone was stabbing me repeatedly. My family GP diagnosed me with gastroenetristis and then ulcers. All through school I woul have to go to bed for 2 days or so (luckily i was boarding so that wasn't an issue during the day!!) of my period, really heavy. My Mum had really heavy periods too, so I kind of didn't think anything of it.

I've tried wheat free and dairy free diets, but while they helped a little, they didn't stop the random pain that just leaves me doubled over and all sweaty and clammy. Went to the doc about feeling tired and my stomach issues. Bloods came back as me having severe anaemia, and went and had a colonoscopy and endoscopy, both came back totally clear. So we were no clearer to finding out what was going on, but I just stopped going to the doc, because i was beginning to feel silly just going in going "emmm... i have bad pain". (Not that the Doc made me feel like that, at all. She's really really lovely)

I actually never put 2 and 2 together until I got a period tracker app about a year ago and started inputting symptoms. All of a sudden I was seeing a real obvious pattern of major pain around my ovulation days, all through my period, and blood coming out of other places after shootings pains... All pretty linked to my hormonal cycle.

So, armed with this i went in yesterday and mentioned endometriosis (after my gf suggesting that that might be something to look into) and immediately my Doc agreed that it's a quite likely possibility, and had taken loads of blood to check my hormone levels and is referring me to Holles St. for more tests (which I assume will be an ultrasound and laparotomy or something?). she seemed annoyed with herself that she didn't put 2&2 together earlier either!!

So now i guess i wait for an appointment... It's wrecking my head though. I kind of hope it is endometriosis, because then at least I'll know, you know? All sorts of questions swirling around in my brain (I'm raging I missed that info day :mad:) but for now it's just nice to know there's others on here...

Anywho, that's it, really.