Endometriosis

aoibhebree

Hi all,

I did a search there for an existing thread on this forum about endometriosis, and couldn't find one, which I was pretty surprised by as it's a fairly common condition. (If I missed an existing thread, please feel free to delete this one!) For those not familiar with endometriosis, there's some information at http://www.vhi.ie/hfiles/hf-599.jsp and plenty more on the internet.

I'll just give my own background briefly - since I started getting periods when I was twelve, they were extremely heavy and painful. I went on the pill Celeste when I was seventeen for about a year, which helped, then switched to Dianette for a couple of years (due to bad spots), and it was absolutely magic - no pain, really light periods, and no side effects. However my doctor didn't want me to stay on Dianette for more than three years (apparently it's too strong or something) so he switched me to Microlite. While my periods didn't get any worse, I had terrible mood swings, weight gain and my blood pressure went WAY up, so that I ended up hospitilised for it in October. I've to stay off the pill now for a while, and after that experience I'd be in no rush to start it again unless I really had to.

Soooo since then, my periods have been getting worse and worse. They're not as heavy as they were back before I was taking the pill, but the pain is just horrific.

By the by, since I was about 15, I have had all the symptoms of Irritable Bowel Syndrome, and these have been getting more severe over the past year or so. I've gotten the camera up my arse etc, but all results were clear.

So, was at the doctor a couple of weeks ago to see what I could do about the pain. He unofficially diagnosed me with endometriosis years ago, as he has tested for absolutely everything else. However, to get a definite diagnosis, a laproscopy is needed. The doctor scheduled one for me yesterday but I was vomiting all day - probably with nerves! - so it was cancelled.

So that's where I am now. Just wondering if anyone else out there would like to share their own stories/experiences/pain relief methods/etc?

Aoibhe
xx

aoibhebree

Wow. I am surprised. Just me then?

easyeason3

I'm on Microlite for the last few years & it's only since you mentioned the symtoms that I realised I get the same things.
Endometriosis seems to be in my family. Aunts, cousins & sisters have it.
I have extremely painful periods so does this mean I have it?

squeky

i was diagnosed with endo in 2004 so if you want to know anything pm me

Equanimity

I also have endometriosis!

I had a laparoscopy about three years ago.
A year before that I had polycystic ovaries. I had a scan & you could see the small cysts. The doc said there was nothing you could do however take the pill & stay on it. I was pretty reluctant as I am not a big fan of the pill.
I found a Chinese Herbalist & gave it a try.
I was given some dried herbs to boil with water & drink twice a day for 6 weeks. I am not joking when I say it is the most vile thing I have ever tasted.
Anyhow I did it & that was that.
When I was diagnosed with endometriosis I was in Galway at the time so was sent to a gynecologist. She did the laparoscopy & lazered the endometriosis.
Interestingly when she was 'inside' she was checking everything else & there was not one cyst on my ovaries!!
She was quite shocked at this as she had seen the scan results from before & they were clearly there. I explained about the chinese herbs but she didn't give any response which I expected.

Anyhow after the laparoscopy & lazering she told me to get straight onto the pill & stay on it until I wanted to have children.

I was on the pill for a while but stopped a year later as I really hate it.
Now three years later the pain returned. It's the exact same as before & in the same spot. I am back in Dublin so I went to my GP just to be certain there was nothing wrong that needed urgent attention & she told me to go straight onto the pill!!
I decided last week to try the chinese herbalist again seeing as it was so successful the last time.
I needed two sessions of acupuncture & again 6 weeks of vile herbs.
In a week the pain has already lifted. I am quite amazed & can't wait till the 6 weeks is up to see how I feel.

All the medical people say stay on the pill but my chinese doctor explains that the pill stops these conditions getting worse but doesn't actually treat the problem. Often she explained then when women come off the pill for a break or to have children the problems come back with a bang.

If anyone want's details of this place just send me a PM.
I am just delighted to have found something natural (although vile tasting - I have to warn you) that really works!!

Pembily

I am 26 and like you aoibhebree I had painful periods since I was 12, went on the pill at 16 cos I gave myself a stomach ulcer from taking so many painkillers. Went to a gyne at 18 for cysts, he put me on the nuvaring, periods got lighter and not as painful but since 21 I have had "IBS", was diagnosed with that in 2004 and due to worse period pains and random cramps went to a gyne in 2009 who diagnosed me with Endometresis!!! He put me on Yaz - que nutcase Pembily - not good, I am on day two of microlite, hope that works!!!

I am going to accupuncuture for a trapped sciatic nerve and she says the pill only helps the endo but doesn't stop it, nothing can stop it or cure it, quite disheartening and not many dr's belive it or know what to do with!!!

I am not sever yet and hope I don't get worse!!! Just wish dr's believed it existed and not fob us off!!

Miss Dymph

Hey guys,


was recently diagnosed with endometriosis also, had CT scan and a laparoscopy to confirm. Been having tests for it for 5 years, im 23 now so it seems to be hitting people quite young. I'm on anti- inflammatories at the moment and they're really helping with pain but the whole risk of infertility thing has me a little freaked. How are you guys all managing? Im going for an op soon to have the growths all taken away

JuliusCaesar

Pembily wrote: »

Just wish dr's believed it existed and not fob us off!!

The Endometriosis Association of Ireland does good work I think and has support groups. HTH

LegacyUser

morning all,

i've had my endo removed twice now, last year i had it burnt away but had no relief from the pain and this year in april i had it removed using an electric currant and helium gas, which seems to have worked a little better. i still take painkillers every month but now it's over the counter stuff instead of prescription medicine containing morphine.

the procedure i had done this year has a success rate of 70% and symptoms sometimes stay away for up to 5 years!! so i'm hoping i'm one of the lucky ones and i'll have relief from the pain.

i've looked at the Endometriosis Association of Ireland website and to become a member you have to pay, which i refuse to do as my endo costs me enough already. have a look at endo uk website - the message board is pretty useful. hope this helps

abbyw1989

Afternoon everyone
I got diagnosed two months ago, the usual symptoms, agonising periods etc etc the doctor has put me on Cyklokapron as I can't take anything hormonal (I get migraines if I do)
Just a few questions if anyone can help :rolleyes::
-I've never had an 'official' diagnosis, my doctor just listened to me explaining my symptoms and said endometriosis. Do I need to have a laproscopy or any other procedures?
-This last couple of periods I also had swollen glands in my neck, is that a normal symptom too?
Thanks in advance

bubbaloo

abbyw1989 wrote: »

Afternoon everyone
I got diagnosed two months ago, the usual symptoms, agonising periods etc etc the doctor has put me on Cyklokapron as I can't take anything hormonal (I get migraines if I do)
Just a few questions if anyone can help :rolleyes::
-I've never had an 'official' diagnosis, my doctor just listened to me explaining my symptoms and said endometriosis. Do I need to have a laproscopy or any other procedures?
-This last couple of periods I also had swollen glands in my neck, is that a normal symptom too?
Thanks in advance

Jesus Christ - your doctor diagnosed Endo without any sort of examination? And prescribed meds for you?
Sorry to tell you but the only way to obtain a confirmed diagnosis of endo is by laparoscopy. Sadly, there is no real "cure" but it can be eased through meds or diet.
I have severe endo and I'm also on Cyckokapron - they are a brilliant relief each month. I didi a wheat free, dairy free diet for three months and that made a huge difference to me too.
I've never noticed a swelling in my glands but everyone is different!
I would ask your doc to refer you to a gynae for a proper diagnosis.
It was very irresponsible of him/her to diagnose it just after a conversation.
Try not to worry - it can be a pain (literally) but it can be treated!
Good luck.

LegacyUser

the only definite way to diagnose endo is to have a lap as far as i know anyway, i would request to be referred to a consultant for a lap and treatment if endo is found, ask about helica treatment - about 70% of women who have this treatment see an improvement in symptoms for about 5 years!

i think i'd prefer to be sure i had the disease before i started taking meds for it.

Judes

Hi girls - I was diagnosed in '95 - after all sorts of tests by everybody accept a Gynae - and was told it was all in my mind and I needed therapy. Love it when the Specialists are proved wrong. Unfortunately at that stage they told me that I probably wouldn't be able to have children - at the time as a single woman and not in a relationship, I was't too bothered but it does hit you at some stage that you have lost the choice.

I had laser surgery to kill off some of the painful spots in '96 and for years on/off pill - pain on/off and twice within a decade the injections that stop a bleed for several months, which unfortunately after this amount of time, I can't remember the name of this drug. But it brings on menopausal feelings - hot flushes etc.

But nearly 5 years ago and having just turned 40 at the time, I was fitted with the mirena coil. This was to help control/stop periods and basically - no bleed - then the endo usually shrinks. So the endo pains have most definitely eased over the years - but I went through years and years of pain, undiagnosed for a long time. Was living in London at the time and joined the Endo support group there which was really helpful for information.

But do talk to your doc or gynae about the mirena coil, could be a solution for a few years at least. And if any of you are quite young and in pain - get it seen to as soon as possible. We all assume that we're women suffering a period pain, maybe a bit more than our friends and don't like to moan too much, so we endure the pain - but the sooner you're diagnosed, the sooner treatment can start - especially if you are worried about fertility. Best of luck all! J

squeky

im 30 years old, i have endometrosis since i was 20, and was diagnosed with it back then by a gynae, who did a laproscopy. I have always had trouble with very heavy periods, was put on contra pill, also I had the mirena coild inserted to but it didnt stop my very heavy bleeding every day and heavy most of time, and certainly didnt help the pain, was put on primolut pill and Cyklokapron but that hasnt help me either, was given ponstan also for the pain, have had 5 surgeries to lazer the endo off but it keep coming back! D and C's, scans etc, ive had it all.

i dont have swollen glands with mine, and im a member of the endometrosis associaltion of ireland, and i find it interesting and you get news letters but this website should be free!!

I have been told about fertility trouble that my endo is severe so its very slim about the children..

Judes

Squeky sounds like you've had a really tough time - I was lucky I only had to endure the Lapro and then the Laser Surgery - but the amount of times you've gone under, exhausting both mentally and physically I would think and you still aren't really getting any relief. Sometimes I wonder is hysterectomy the answer? When I was getting the Laser Surgery years ago, there were a few women in the same ward as me - some younger, some older, some with children, some without who had undergone hysterectomy - and later everyone of them spoke positively about the experience (after the healing process of the hysterectomy). My pains first started in my early 20's and it took years for the Endometriosis to be diagnosed. Try and stay positive. I remember my mother said to me,when I told her about me not being able to have children,was that there were millions of children in this world who needed love - and you don't have to have your own to show that love. Stay strong Squeky.

squeky

Judes,
Thanks for your kind words and it is mentally and physically tiring but i was told about a hysterectomy but i dont want to think about that as i am 30 with no children and i wasnt very maternal to be honest from day one, loved all my friends kids and godaughter but then when i was told that about the fertility and hysterectomy, it was like a train hit me and i then wanted the chance to have kids, very wierd i know! and angry it taken away from me as all my friends say i make a great mother, but they couldnt believe it when i told them, they said how unfair life can be, but i will stay positive and you never know i could beat the odds..

If it happens it happens and if not im still alive, i suffer from Chronic pain also from a bad car accident 5 year ago and have had so many operations for nerve damage so im well used to hospitals, operations and being poked and prodded so i have good enough pain management skills, god gave me the cross to bear so i better try carry it!! Would give anything to be pain free but it not going to happen so have to get on with it and stop moaning ha!!!

when i told my parents what the gynae said they just started roaring crying very emotional but you never know, it could happen.just have to stay positive.
Thanks Judes

bubbaloo

Squeky - you sound like you've been through the mill but I (and many others) are proof that you can have children. I was through similar amount of lasers and have very severe endo. I had a laparotomy 3 years ago which was done by Dr John Monaghan in Ballinasloe. Honestly I cannot say enough about this man. I don't know why he is different to other surgeons but he is so thorough that he seems to be able to get rid of the endo for a long period of time. Once I recovered from the laparotomy (6 week recovery) it was a matter of finding the correct drugs and correct doseage but once we got that far, I was pregnant within 5 months and I now have a beautiful 18 month old boy.
It can happen and I really believe that positive mental attitude is a lot to do with it - my doc even commended me on my determination and perseverance. Best of luck!

squeky

bubbaloo,
congrats on the baby that is great news and now im even more positive that it can happen! I was always positive, stubborn and headstrong and wouldnt have the hysterectomy, when they said i should, just cudnt do that to myself as am so young and you never know what could happen, had to give myself the chance(If that makes sense), yes i know of that surgeon you are talking about as i was seen by Dr. O'Dowd in ballinasloe back in the day but he gone now so seeing other specialist. I have check-up's every 8 weeks and they scan me every single time and then every year or so they bring me in for the laser and Laparoscopy to clean up in there!! and take some samples for testing also but it comes back very fast. im not getting much lasting out of it. but ill persevere on i guess..

Very grateful for you telling me your story and its great that you had your bundle of joy! There still some hope for us all then

abbyw1989

Thanks for all the replies,stories and advice ladies, I've decided to go back to the doctors a.s.a.p. and get everything sorted out

squeky

abbyw1989,

good women abby, very best of luck xx

abbyw1989

Thanks squeky, fingers crossed I will get all the answers I want... I hope you can get what you want out of life, you sound like you've had far too may struggles we must all keep perservering to get what we want Good luck for the future xx

squeky

abbyw1989,

Please god you will get on good and get it all sorted out, il keep on smiling cause if i didnt i would keep crying, no point in that! so i do stay positive, if it hapens it hapens that what i think so, we must all keep in touch and good luck for your future to xxx

bubbaloo

Good for you ladies. Perseverence is the key.
For me, the laparoscopies didn't solve much of the problem, but as I mentioned above, once I had the laparotomy (more invasive surgery with 6 week recovery) I was fixed long enough to have my little boy.
Good luck to all.

squeky

Thanks bubbaloo, take care xx

Kizzie.H

I noticed that this thread has been inactive for a while but i was hoping that somebody here could give me some advice. I'm 19 years old and the doctors have said I have endometriosis. As well as this both sides of my family have had great difficulty conceiving and have had many unsuccessful pregnancies. I have basically been given a time limit of roughly 5 years to have any kids that i wished to have as they expect my fertility to drop drastically in my mid 20's. the problem I'm having is that i am due to move away for college next week, to partake in a very physical course which will last 4 years. Also I'm single. So i pretty much have to decide to stay in college or to have children (if a suitable partner is in place). this has me going mad as im sure it's not the usual thought going through a young womans mind as she gets ready to set off for college. has anybody else had an experience like this? Can these judgements be trusted? or am i just over-thinking this? any input on this would be extremely helpful. Oh and by the way, I have wanted 2 children ever since i was a little girl. my dream was to get through college, start my career and then have my children. Any comments or input or advice on this will really help out this particular stressed out young woman.

Kizzie

bubbaloo

Kizzie.H wrote: »

I noticed that this thread has been inactive for a while but i was hoping that somebody here could give me some advice. I'm 19 years old and the doctors have said I have endometriosis. As well as this both sides of my family have had great difficulty conceiving and have had many unsuccessful pregnancies. I have basically been given a time limit of roughly 5 years to have any kids that i wished to have as they expect my fertility to drop drastically in my mid 20's. the problem I'm having is that i am due to move away for college next week, to partake in a very physical course which will last 4 years. Also I'm single. So i pretty much have to decide to stay in college or to have children (if a suitable partner is in place). this has me going mad as im sure it's not the usual thought going through a young womans mind as she gets ready to set off for college. has anybody else had an experience like this? Can these judgements be trusted? or am i just over-thinking this? any input on this would be extremely helpful. Oh and by the way, I have wanted 2 children ever since i was a little girl. my dream was to get through college, start my career and then have my children. Any comments or input or advice on this will really help out this particular stressed out young woman.

Kizzie

hi Kizzie - there seems to be two threads on endo. The other one is a lot more active - here's the link: http://www.boards.ie/vbulletin/showthread.php?t=2056177437

My own thoughts on your situation is that your doctors have panicked you, at a very young age, into making a decision that will affect the rest of your life. Firstly, the only way of a sure diagnosis is keyhole surgery - have you ever had a laparoscopy done? Doctors cannot definitively say that you have endo unless this surgery has been done. Also, yes your fertility will decline as you get older, but that is the case for every woman. I have severe endo. I was 28 when we started trying for a baby. Five years (and two miscarraiges) later I got a diagnosis of endometriosis. I had major surgery at 33 and got pregnant soon afterwards and have an amazing 3 year old boy. I am now 38, I have had major surgery again and we are trying to have another baby. yes it's been extremely difficult but it's been possible. There are no guarantees at 20 years old that things will run smoothly either.
Don't rush into any decisions. You want to go to college, you are currently single - this is (presumably) not the time you imagined you would have children, so think about your life and what you want but don't let the doctors pressure you into something you don't want at the moment.
Good luck.
And post on the other thread because there are a lot of women on there with endo and they're very supportive.

emilymc

hi everyone
just thought I would share my story with you... I have had over 15 laparoscopys and 3 laparotomy's to remove cyst normally the size of pears from my ovaries... IN the end I was diagnosed with endometriosis in 2003, I had a blocked Fallopian tube and one is folded back on itself. I was told that if I have anymore surgery (AS IF I WANT TO BE OPERATED ON)avi, I would end up with bowel being removed and having to have a colostomy bag.. I was told I would never have children and if I did I would end up having ectopic pregnancies, This was a lot for me to take at the time as I always imagined I would have babies of my own. I had 5 miscarriages since then

In 2007 I gave birth to a beautiful baby girl who weighed 9 pounds, although I was in labour for 35 hourstand eventually had to have a c-section as the scar damage from previous surgery was horrendous and I nearly died. My beautiful daughter Hannah Catherine

In 2011 I gave birth to a beautiful baby boy who weighed 10 pounds 8 oz, I was in labor for just 12 hours ( I wanted to try have a natural birth) but my previous scar from surgery collapsed and I had to have emergency surgery where I nearly died and had to have a transfusion as the baby went into distress. But my beautiful baby boy Riley was finally born.

I have had 3 miscarraiges since then, I am in constant pain every day and the hospital will not even consider me for a hysterectomy as I am only 32 as I have asked for this to try and ease this constant pain I am in........I have never gone on any sites and feel very isolated in my condition .... Sorry for my rant Emily

mariacriben

Hi ladies, Im 32 and had my first laporoscopy done 6 weeks ago. They found mild/moderate and severe case of endometriosis so they burned it off. My recovering was slow and my first period (a month after surgery) was excruciating but heard this was normal enough. I had sex with my boyfriend for the first tiime since the op when that period had finished (Monday). Compared to before the op he thought that i felt very wet to the point we couldnt enjoy the sex as much. But my trouble before the op woul've been that i was too dry. It was very tender and a bit sore while we were having sex so we stopped. We tried again on the Thursday and again, it was sore. The day after i started bleeding. Im on the pill but i was only a week into it. The blood was just on the tissue that once and very slight later that night but nothing came after that. I was getting cramps like period ones from the thurs to the sat.

I hope you can understand all of that. My worry is that the endometriosis has come back?? or am i just not fully healed??.

Hope you can help me.
Thanks, Maria

Lainey89

mariacriben wrote: »

Hi ladies, Im 32 and had my first laporoscopy done 6 weeks ago. They found mild/moderate and severe case of endometriosis so they burned it off. My recovering was slow and my first period (a month after surgery) was excruciating but heard this was normal enough. I had sex with my boyfriend for the first tiime since the op when that period had finished (Monday). Compared to before the op he thought that i felt very wet to the point we couldnt enjoy the sex as much. But my trouble before the op woul've been that i was too dry. It was very tender and a bit sore while we were having sex so we stopped. We tried again on the Thursday and again, it was sore. The day after i started bleeding. Im on the pill but i was only a week into it. The blood was just on the tissue that once and very slight later that night but nothing came after that. I was getting cramps like period ones from the thurs to the sat.

I hope you can understand all of that. My worry is that the endometriosis has come back?? or am i just not fully healed??.

Hope you can help me.
Thanks, Maria

Hi Maria. There's 2 threads on endometriosis here. This one is a lot more active http://www.boards.ie/vbulletin/showt...p?t=2056177437

I would guess you are still recovering from the surgery. I've had a few and find while I generally feel ok after a week or 2 it would by up to 3 months before the random twinges would stop altogether. The pill can cause crampy pain and other symptoms when you go back on it. These should be listed in the leaflet that came with it.

Regarding the sex, I hope this isn't TMI but I cannot underestimate the importance of foreplay and proper communication. I found myself in the past that because I had experienced painful sex I was subconsciously expecting it to be painful every time I had sex. This leads to your body tensing up thus making sex uncomfortable/painful. Thankfully I now longer have this problem. Fell free to PM me if you want to talk more.

Gael23

My Mum had this for years. She had all the Bowel Adhesions, Laparoscopies , cysts removed and the whole lot. A point came where she would be off work for 2 weeks every month with unmanageable periods.
Ended with a radical hysterectomy (Ovaries included) 6 years ago but she got her life back

cl2395

I am 25 and have recently being diagnosed with Endometrisis stage three i had a laposcopsy . They found two cists on my right ovary and one had burst. My whole ovaries were covered in endo.The pain before the operation was excruciating.. I was diagnosed with IBS for years. I have been recommened to take the pill Cerazette which i will not take. I dont think hormone problems should be treated with other hormones.

Im surprised back the lack of help, support and understanding out there for the condition. I have been trying to look up natural practictioners but i cant seem to find any that help with natural hormone therapy.

Its very comforting to hear someone who has gone down the natural path.

Would really appreciate if you can send me on the Chinese place I would definatly pay a trip up.

Clare