Endometriosis - please help me with my pain!!!

[missgiggles]

Hi all!

I'm Amy...new to this sort of thin but thought I’d give it a go! Surely someone has to have an answer for me!

I'm 20 years old and was confirmed to have endometriosis in May (2007) following a laparoscopy.

In February last year (2006) I went to my local GP and informed her of my symptoms. She put me on monofeme to try and stop the pain I was having. After a month, I decided that it was bad! I felt very unwell in the stomach and was very moody! And it didn't help my pain in the slightest! So the doctor prescribed loette as an alternative - it’s not as high a dose apparently so it was meant to stop me from at least being sick. Anyway...that was pretty useless too! So I went back on the monofeme and took it at night rather than in the morning. This made the side effects of moodiness & the general feeling of unwell disappear. However, did not assist in my pain!

My GP then referred me onto a gyno. I went and saw her but was not very confident in her because I had a lot of questions that she couldn't answer properly and basically just said "have a laparoscopy"...so I got a second opinion! And this dude said that he wouldn’t do it on anyone as young as me unless there was no other way! (Which apparently there wasn’t!) So I went back to the first gyno and decided I would go ahead with it. I was SO scared!!!

I had the operation on the 21st of May this year. I had my follow up appointment 5 weeks after the operation. I had my period twice in that time and the pain had actually gotten worse! I was notified by the gyno that they had found endometriosis on both my ovaries and a lump in the middle. The lump was unidentfied because it was stuck to a whole lot of vital organs and if they had to remove it for a biopsy, they would have had to take everything else with it. I.e. a hysterectomy! But they were quite confident that it was endo.

So, the gyno suggested a couple of options. One being zolodex and the other implanon. And I have heard far too many cases that have not been of benefit. So I am not too keen! She also suggested one other drug but don’t remember what it was called but I wouldn’t use it because she said that it would inhibit my chances of conceiving in the future.

So, I invested in a naturopath! I went to see him and he put me on a few herbs etc. and they did nothing for a month, so he added magnesium. And that did nothing. And now he’s put me on some other stuff that tastes gross and that’s done nothing either! He was quite confident that they would work...but knowing my luck...they haven’t!

The gyno suggested that I have children before I’m 25 or it will become quite difficult to conceive and if I do conceived after 25, the pregnancy will be almost as bad.

Now I just don’t know what to do! The naturopath asked my boyfriend and I are serious...which we are...and then suggested that I just have a baby so at least I’ll have 9 months without too much pain. I know that the longer I leave it...the more it affects my fertility...but I’m only 20!!! (And I have to get married first!)

I have taken every over-the-counter pain killer and none of them work....but if I take anything stronger i.e. prescription drugs, they tend to be too strong and I become dizzy, have hot flushes and just generally feel very very unwell.

If anyone has any suggestions on what I can do to stop my pain...I would really appreciate your help!

[kelly22]

hello there my name is kelly and i have been told that i have endometriosis but they cant dont nothing for me till they get my fiance sorted cause he has low sperm count so im in loads of pain today i really have had a bad day i have had pains in both side of my stomach and like somthing heavy im my stomach that shoulnt be there it really does hurt also my back is starting as well and i just feel like screaming so i know what your going through

hope to hear from you soon kelly

[missgiggles]

Yeah...I feel your pain!!!...I'm always getting a lot of crap from my boyfriends mates and keep getting told to "toughen the **** up!!!" But when I saw one of his mates shortly after my operation and described to him that my pains were like someone putting a large serrated edge knife in my stomach and slowly cutting and turning at the same time...his face was just full of shock and he said "REALLY?" And I was like "YES REALLY!!!"...and since then...they've all been a bit nicer to me!

Depo provera is the other drug that the doctor wanted to put me on! Do you know anything about it?! Or does anyone!?!?! I haven't heard much good about it either! She told me that I had a choice of the three or just put up with the pain! And...At the moment...I'm just putting up with the pain! It is really hard to handle sometimes but if I think about it...I only really have to deal with it like 3-4 days a month and then I'm ok! Whereas if I were put on a drug like depo provera and it didn't agree with me...I would have to just wait until it wears off...and that could be months!!! and I really don't that! Nor do I want to go on something that will induce a menopausal state when I'm only 20!

Everyone just seems to have run out of solutions. My friend suggested chocolate, blankets, hot water bottle & Panadol! And I just thought to myself...if only it were that easy!!! She just doesn’t know how lucky she is!!!

[Leigh22]

i dont have endo, but i have been on depo before but went off it because it has been found to reduce bone density... wasnt too keen on that, apparantly you cant be on it for any more than 9months? to me that sets off alarm bells...

i am really sorry that your in so much pain, hope that you find a solution soon!

[firemansgirl]

Have a quick look on the ECCA sight this might help you with other options... Leis x

[LJ*]

Hi Miss Giggles,

I've recently had surgery to cut out all my endo. Over the years I have had laparoscopies, laser treatment, zolodex ect.. which has not helped at all. I had a very severe case of endo and have been told that the only way to get rid of it is to have it cut out. My endo was "everywhere" and my surgery was major, but the surgeons are confident that they got it all and so far so good.

I understand your pain as i put up with extreme pain for many years (I'm 37) and tried all sorts of pain killers. The only one that I eventually found to help me was Voltaren Rapid. You can buy Voltaren Rapid 25 over the counter or Voltaren Rapid 50 (which is stronger) with a prescription. I also learnt to start taking them before my pain took hold and then continue to take them every 4 or so hours during my period. If I waited until I was in extreme pain (doubled over/foetal position) then they wouldn't work. I did also find that baths and hot water bottles helped. I was known to spend hours in the bath topping up the hot water as it cooled.

Good luck and I hope you can find some relief becasue I know how severe the pain is and how those around you don't necessarily understand what you're going through.

[SunnyM]

I'm 32 and have had endo for 17 years. Unfortunately it took the medical profession 15 years to make the diagnosis. I thought getting pregnant would fix everything, so many people seem to think it does. I got pregnant 5 days after my first laparoscopy (the surgeon told me after the surgery that I'd need to have IVF because the endo was so severe but we got lucky). Until the laparoscopy I was on prescription painkillers 24/7. Once I found out I was pregnant, I expected the pain to stop, but it went on for another 5 months. And the worst part was that I couldn't take the drugs any more. The last 4 months of the pregnancy were great, I couldn't remember ever being pain free for so long, I wanted to stay pregnant forever. Then I got my period again when our baby was 7 weeks old. When she was 11 weeks old the period pain was so bad I couldn't look after her for 2 days. But I was quite happy because the pain was only coming during my period, not for the whole month. Now my baby is 19 months and I am starting to get bad endo pain during ovulation and also during my period. And the period pain is as bad as it ever was, worse actually. So I guess I'm saying that while it is the best thing ever to have a baby, it mightn't necessarily fix the pain. But if you're worried about not being able to conceive later on, that would definitely be a reason to start trying now.

To be honest, I haven't found any drugs that really work. Once when I went to casualty because I thought I was going to die, they gave be Innocid (spelling?) suppositories and they were good. Generally the only thing that works for me (sort of) is to get into a boiling hot bath, take whatever painkillers I can find and get into bed (if I haven't passed out in the bath). But I did some research on endo, I think one of the theories is that is is caused by too much oestrogen. One of the things that seemed to work for me for a while was cutting out red meat, dairy, eggs, refined carbohydrates and foods packed in plastic. I also ate lots of fibre, saturated-fat free food, cabbage, broccoli, beans, legumes, onions and garlic as these are supposed to help get rid of oestrogen. Plus Vitamin B6. But it wasn't much fun. I wish you the best of luck in finding a solution for your pain.

[kelly22]

hello thankyou for your reply here is ur mate i have to pu up with the pain because they want to sort out my boyfriend 1st, this week i hve been really bad i have been getting the pains in my right side iave never has the pain on that side before so i think i may have endo on that side now i have never heard of that drug, i may be going on clomid in january but the dr has told me that he really wants me to get pregnant as soon as i can.

hope your okay and hope to hear from you soon

hugs
kelly

[Angelwings11]

I got a shot of Pro-vera for contraception purposes (prior to that I'd always used "the Pill"), within a month I was in shocking pain which gradually stayed 24/7 for about 18 months (couldn't even walk some days). I never knew i had endo until then, always had pain at period time but thought it was normal, I was 40. I don't know what the connection was to the injection, I never thought to ask. When I saw my gyno at endo-gynae clinic at RWH Randwick, he put me on Pro-vera tablets saying " I don't like the injections".
I tried Indocid suppositories and I agree with Sunny, they were a help. Other than that painkillers, hot water bottles; I even used a weight-lifting belt...flat and broad in the middle, that helped me. One that was quick and simple, a hand towel folded in half and half again, in the microwave for about 30 secs....warm and easily slipped into trackkies or pyjamas.
I feel your pain guys....hope this helps.
Linda