running out of Solutions with my endo

[Dabs]

I am 27. I suffered with serve period pain from my first period when I was 15, I was put on the pill, this worked for about 3-4 year, I still had pain but I could cope, I was not throwing up and fainting when I had my period. I was officially diagnosed with endo in 2002 and had a laparoscopy and the endo was removed. I then had an implanon implanted in my arm, the 1st one worked for about 2 years and three months and then the bad pain returned. My GP replaced the implanon and that worked for about six months and I then saw another gyno and had another lot of surgery in October 2005, she told me that there was only a copy of spots of endo and she lasered them off, but the pain, she told me was in my head. I also had a mirena IUCD placed in my uterus. In January my pain was getting bad again, I returned to my gyno who told me that the pain was in my head and maybe I should have a baby. I am not married and my boyfriend lives overseas. It was a great way to spend $150 and I will never see that gyno again. I would like children one day, but not any time soon. The past five months I have had a period every 28 days, I get pain 3-6 days before and I usually throw up and have pain for two days into my period also. I have researched Depo- provera but I have found so much negative side effects, but I don't feel I have a choice. I have taken the last two days off work as the pain is so bad. I was wondering if anyone has had any success with Depo-provera injections or if anyone has a good gyno who is going to try and help me not suggest I have a baby. As I am already dreading next month.

Thanks Dabs

[visitor1]

Dabs sorry i cant be of any help, but i hope some one can. Thats horrible to be in that much pain each month...

What kind of dr suggests having a baby to combat pain????

[nic]

Welcome to BB Dabs
Don't know how much I can help you out, but thought I would post to say I can understand, and hopefully someone else will provide you with some more useful info.

I had horrible AF's as a teenager. Every month, I would be off school for a couple of days, and when I needed to go to the toilet, I would fall out of bed onto the floor and crawl to the loo. They were irregular, painful, full of clots, I had migraines, and when on the pill, I was vomiting as well.
My GP said he had put me on all the basic pills, so my last resort was the depo injection. I had tried the pill version, and it didn't work, so he warned me that for something like 1 or 2% of people, they get AF until the injection wears off. His other suggestion was for me to get pregnant and see if the pain was better after having a baby, as it sometimes does help. I was around 15 - 16 yrs old when he told me that!

I left his office with a prescription for painkillers, with him telling me not to visit too often for repeat prescriptions, in other words he was watching me to make sure I didn't become dependent upon them.

After a few years I went back and said i couldn't put up with the pain anymore, and I wanted to try the depo injection. He gave me a shot that was for 1 month instead of the 3 months, he said if I had no side effects from the 1 month injection, he would then give me the 3 month one. Well, I ended up with AF for the whole month. I went back to see him, and he wrote me out another script for my painkillers.

I did see a gyno when I was a teenager, who told me that I didn't exercise enough! I was a size 8 (and sometimes smaller) played squash, and walked everywhere! the gyno said that because I was having symptoms, and I had a family history, it didn't mean I had it, I was too young. But when I turned 25, I was to go back and see him, as he would operate on me to remove my endo!

I fell pregnant when I was 20. After my DD was born and AF returned, I was pain free, I only needed to take panadol a couple of times a year.

I know some women can manage their symptoms through diet changes, and some are on medication to stop AF from arriving so often.

Hopefully someone else will be able to suggest a gyno for you. I hope you find someone who will help you with the pain.
Goodluck, and don't forget to let us know how you go
Nic

[Dabs]

To Nic

thanks for taking the time to reply, i am glad that your pain went away. I just think i will scream if another doctor tells me to have a baby, as my boyfriend lives overseas and it is just not a option for us at the moment. So besides the depo only working for a month did you have any side affects? I have never been told to chance my diet, i know caffene makes my period pain worse, but it is hard to avoid when i never know when i will get a period. I eat healthy and do a lot of exercise so i can't see any dietary chances helping me. I think i am just going to have to try the injections, as i really don't want to have to have a third surgery. It would just be nice to find a doctor, preferably a female who is understandive and not dismmissive and helps me find a solution. As i am also concerned about my liver with the amount of pain killers i takes each month.

Dabs

[Dabs]

Kimbaz

thanks for the reply

I have no idea what stupid doctor suggests having a baby. A doctor who I will never go back to!!! In some not all cases pregnancy can help clear up endo, but I have a friend who is 36 who has just had a hysterectomy after her three children to get rid of her endo, so it doesn't always work.

Dabs

[nic]

Dabs, sorry for not replying sooner, have only been able to type short one handed posts while feeding DS.

It was quite a few years ago that I had the depo injection, so can't quite remember what side effects I had sorry. I think having AF for a month, was my main one, which probably made me not remember any other side effects lol.

It's interesting that you mention caffeine making the pain worse. we were having a discussion about the same thing a few months ago on here somewhere? I'm the same, if I have a coffee or chocolate or coke, the pain is worse. After the 2nd day I can return to having them, but I find that it's those first 2 days that I crave all 3 of them the most!

I'd say you've got nothing to lose by trying the depo injection. Maybe see if they can give you 1 months dosage instead of the 3 months, initially, that way you might have an idea of any bad side effects.

I know there is a website for endo, from memory it is the ECCA. Yep I just googled for it, it's the Endometriosis Care Centre of Australia. Check them out (if you haven't already) I know they have a list of endo specialists on there, so that might help you out too.

Nic

[BellyBelly]

Have you tried acupuncture at all? Just something different.

[desist]

Hi Dabs,

I've had severe period pain since I started (about 15yo, i'm now 24) and was diagnosed with endo in 2006 during a lap where some of it was burnt off.

This did not help so i went to an endo specialist who cut most of it out in april this year. He put me on the pill plus primolut N continuously to stop periods altogether. I have only had one major bleed since april and this was because I forgot to take the pill for a day.

I went back the the gyno because the pain was very bad during this bleed.. i was devastated! The doc said it should not hurt after the surgery. I had an u/s which showed a very bulky uterus (3 times bigger than it was last year) but the pills i'm on are actually supposed to reduce the size, so any increase was abnormal. Every night I look 3 months pregnant :P And i've always been very skinny.

After further investigation and an MRI it was discovered that i have adenomyosis (lots of info on this forum) which is why the pain is still as bad as before. It is also causing more general pain throughout the whole month.

My only option is to live with it and be put on more hormones incl Mirena until i have children and have hysterectomy.

Not trying to scare you, but this is only a possibility. I hope for your sake that it's not the case

Cheers and good luck

[Cassius2]

Hi Dabs,

I'm sorry that the endo is giving you such a hard time. it's the pits.

I was diagnosed with it at the end of 2002 after having an 8 week miscarriage. it was all over the place including the outside of my cervix (sorry if TMI!).
so it is very possible that they just haven't found it all in your case. or that the scarring from it is causing such bad pain (a very real possibility).

I too was on the pill for about 5 years and was told that it and the lap would be my only options. i decided against the lap as he told me in my case, there would be a high scarring risk and complicate any attempts to fall pregnant (which i was already told was basically impossible without ivf).

Considering that the pill works on endo to kind of mask the symptoms (ie. lessen pain and flow and length); i decided that i wanted to know exactly what my body was doing after so long on the pill.
from then on i went through a bit of an odessey. i changed my diet to meet some of the guidelines offered on the endo australia association website and had to feel the full force of the endo in action. it gave me ALOT of insight into my cycles (or lack thereof!). it also made me realise just how frikkin bad it was. i would find ovulating unbearable and yeah, like you would be passing out and vomiting come AF.

In the end it was the lack of a BFP that kicked me into action, that and one terrible day with AF. my DH had a good friend of the family that was an OB/GYN who specialised in Homeopathy and fertility. she agreed to meet me despite a usual 12 month wait list. she sat me down and 3 hours later we had gone through my ENTIRE medical history, including when my Mum was pregnant with me and what illnesses and medication she took...she gave me a prescription with a tonne of homeopathic treatments. and off i went.
the first cycle was rather terrifying. i have never experienced sooo much purging (sorry if TMI!). and by the second cycle i had my first 'real person' AF .
there was very very little pain, and it was normal in appearance and length. and by the third cycle i was pregnant (had took 18 months!).
after bubs, i had a fear of it coming back. and the first 3 cycles were a bit hairy, but now things are back on track, hopefully for good. but if it does sneak up again i'll def be going back down the homeopathic route...

sooo after a waayy too long post, i can highly recommend seeing a good (emphasis on good!) homeopath, who can maybe specialise in fertility stuff.

unfortunately mainstream medicine just doesnt have much options for girls with endo, so they generally put us in the too hard basket. but i am proof that it can be overcome with VERY LITTLE intervention.

HTH!

And good luck with it all...keep us posted

[Dabs]

I think I may have hit the jackpot today. I have found a Dr who is a leading endo specialist and present a paper at the international endo conference this year. I thought I would have to wait for months and months to see him. I rang this morning and the person who called before me had cancelled. So I was able to see him today. I was quite apprehensive about seeing a male gyno, some people may think this is crazy, but in my profession I was privy to all the horrific details of that recently charged 'Butcher of Bega', but I went (taking my best friend with for support) and he was so good and understanding. He listened and told me what he believed was best and showed me all the research he had undertook and why he believed it would help. I am still unsure about the depo injections and he respected this. So I am scheduled to have surgery on the 20 of October at a nice private hospital and he had told me that he will not burn the endo but cut it out, as then it cannot grow back like the burning method (diathermy). So although surgery is not lots of fun, I think this might and I say might as I hope so much, be the start to the end of my pain. I think just having a doctor who really listened was so amazing as well. Thank you to all the people who replied. It is nice to know that people care and when I was in so much pain nice to know that people understand, as most people just look at you, when you mention bad period pain and look like it is just a bad excuse.

Dabs

[Cassius2]

Oh that's fantastic news! I am glad that you have found a positive path to go down!

Good luck with the surgery!

Clare

[TB08]

Dear Dabs

I am 33 and have suffered endo since I was 18 years old. I've had major surgery to clean it up but the symptoms keep recurring. I too have been told to hurry up and have a baby. I believe that my insides are very damaged and have been told that I have a less than 5% chance of getting pregnant anyway.

Today I have elected to "go natural" and seek the help of a naturopath. Not only am I desperate to alleviate my endo symptoms but time is running out to start a family and I feel that the older I get the worse my reproductive system may get. I've been recommended Sharkey's Healing Centre which is situated in Queensland but you can access online. I have heard nothing but very positive outcomes from these people. I am happy to stay in contact with you and let you know how treatment goes so you can gauge if it is worth it for yourself to try.
xTB08

[Jocelyn King]

Dear TB08,
I am one of the Naturopaths at the Belly Belly centre in Melbourne.
It is great to hear you have opted to go down the natural therapy path - I am sure you will get great results.
Dabs, too after you have had the endometriosis removed do consider going to a really good naturopath in Sydney - as we have the best form of treatment available for treating endometriosis - with no side effects.
It is really sad that you have not been able to get any joy from going down the medical pathway.
Naturopathically, endometriosis is an oestrogen dominant condition. This may result from having an undwrfunctioning liver so that oestrogen cannot be broken down properly and builds up in the body or it may result from being exposed to too many oestrogen mimicking substances in the environement or it can be inherited or all three.
This excess oestrogen causes endometrial tissue to grow outside the uterine cavity causing pain and adhesions.
Our approach is to normailse the menstrual processand regulate the cycle, reduce pelvic pain, reduce oestrogen excess and improve clearance and redcue and prevent adhesions.
This involves dietary changes, taking herbal tablets or liquids and reducing stress if this is affecting things.
RESULTS ARE FANTASTIC so if any of you are in Melbourne and suffering from endometriosis do come down to the BellyBelly Centre in Canterbury.
Best wishes,
Jocelyn King

[Dabs]

TBO8
Statistics are a dangerous things, I think some doctors use them too often.Please don?t think I am being insensitive I just have a friend who was faced with the same news and she has three beautiful children.
My friend was they told her she COULD NOT get pregnant due to her endo, her children are nearly 4, 2 1/2 and 9 months old. Yes she needed to have a laparoscopy between baby 2 and 3. She was 35 when her first baby was born and 38 when her last was born. I so hope TBO8 that you can fall pregnant and you do not get too stressed over it, I am sure it must be so very hard. I am 27 and do not plan on having children for at least 5 years, this may seem foolish but my boyfriend is South African and he will not be moving her for at least two years.
I am going to look at the Natural option after my surgery, At this stage I think I am going to have to re schedule my operation as my mum was diagnosed with ovarian cancer that has spread to her stomach on Monday last week, so my pain will just have to wait, as I do not want my mum to need to worry about my when she has chemo and cancer to deal with.

Dabs

[Ducky]

Dabs if you ever need another gyno (let's hope you don't) there is a lady in the RPAH Medical Center (In Newtown) her name is Dr. Raja.

[joel's girl]

Hi dabs, sorry I didn't see this thread sooner although I think you may have already found the wonderful Dr Cooper yourself ??

Sorry to hear about your mum and hope you can have the surgery soon. He is truly a genius, the pain relief I got from his surgery was amazing.

If you need any further info on the surgery , recovery etc.......feel free to ask or PM me.

[Dabs]

After speaking to my local GP and being told by her that there may never be a good time to have the surgery with my mum's cancer. I relied on my friends and had surgery on Monday with only two friends knowing. As my mum is sick and as she was having chemo this week I had to lie to her and tell her I was working interstate otherwise she would have been hurt that I didn't stop in and visit her. So Monday I had my surgery. It was supposed to last one hour but lasted three, after getting sick from the anesthetic and getting high on the endone pain killers I was given for the pain, I spend the week in bed at my best friend?s house. I saw my doctor yesterday who told me that my endo was bad and all intertwined in my bowel. So 6 months of Zoladex injections is what he believes is the best option and after my next AF, i am back to my Dr for the first of 6 Zoladex injections. So I drove from my friends house to visit my Mum and nearly passed out with the pain, sitting up is not a very nice experience, but each day as more of the gas moves and my stomach returns to normal, (it is very swollen at the moment) I will feel back to normal.
I am glad the surgery is over and I can look forward to getting on with my life (so I hope) without endo being in the way. Had anyone been on Zoladex and had any positive or negative reactions to it. I hear that hot flushes may be a problem

Dabs

[Nai]

Dabs - I would definitely look at the naturopath option. I have had friends with endo and others with PCOS who have had great success with diet and supplements through specialised naturopaths. Most are claimable on Private Health Insurance and as I don't think there is anything to lose by trying it out - if it doesn't work for you then maybe look at other options.

I have personally had success with naturopaths for hormonal related weight issues after the birth of DD. I will definitely be doing the same if I have the same issues after this bub.