I guess I always knew that something wasn't quite right, I started my menstrual cycle when I was about 12 or 13, (I am one of these women who can never remember when my last period was, let alone exactly when I had my first period!!) and I can remember getting really bad cramps, I used to have hot water bottles living on my tummy when I had my "friend", and the amount of Aspirin I used to take was crazy!! So, after a few years of this,when I reached about 15 my Mum took me to the doctor, and he put me on Birth Control Pills, so I stayed on them for a while, and some months it helped, some it didn't.
Well, the pain just started getting more severe as the years rolled on by...so, skipping by a few years, I was planning on moving over here to the US and I guess all the stress I was under brought it all back up to the surface. I started having dizzy spells when I had pain, and actually fainted a couple of times. So, I went back to my doctor.
He said that it was very normal for me to be having these "panic attacks" because I was moving to a different country, away from everything that I knew to be "normal'', so he said that I was under alot of stress and to try some calming remedies, you know the normal BS, herbal teas, reading, warm baths etc..... So I left his office thinking that as soon as I move to to the US and I settled down, things would be ok again! BIG mistake, things only got worse!! So, I went to see my new Family Practitioner and he referred me to see a GYN.
Well, to cut a long story short, they didn't know what was wrong with me, I was then referred to a Gastroenterologist, and had a Colonoscopy, (if you've never had one of these, trust me they are VERY unpleasant!!) well, guess what? They found nothing, so back to the GYN, he then suggested a number of scan's (including CT scan and an Ultra sound), one of which found Gall Stones, so I was scheduled for my first Laparoscopy, to have my Gall Bladder removed and to do an exploratory exam of my abdomen.
The result? Gall Bladder was removed, and my appendix was also removed because they found some Endometriosis there. Now this is where it gets complicated, the GYN that perfomed the pelvic exam, wasn't my normal GYN, but I had to see someone else because of Insurance reasons, and the hospital I was having the surgery done at, but he told me that he found massess of Endometriosis in my pelvic area, But NEVER wrote it up in his report!!!
So, carried on having pain, and taking prescription pain killers, tried changing my diet and nothing, still pain, it was getting unbearable. I started to get pain on a daily basis, my cycle was all screwed up, and I was so unhappy. I then changed Insurance companies and found my new GYN Dr. Joseph Rota (who may I add is WONDERFUL) he immediately suspected Endometriosis and scheduled me for my second Laparoscapy. He found masses of Endo, and referred me to Dr. Wendy Schillings (a specialist in Reproductive Endocrinology & Infertility, again, who is WONDERFUL). We discussed my options, and decided to give Lupron a go.
So, Lupron it was, after my first injection, it seemed to be going away, but of course because I was forced into Menopause, I started having the sleepness nights, the hot flashes, sweats and of course the moods swings, I would also forget the smallest of things!! So I started taking another drug called Prempro, this relieved most of my Menopausal symptoms, but unfortunatly, because Prempro has synthetic estogen level, it was just 'feeding' the Endo.
After about 6 months of Lupron, we decided it wasn't working as I was still having some pain because of the Prempro, so we decided to try to 'burn' and cut out as much Endometriosis as possible, so back in for another Laparoscopy. In fact it's taken me so long to write my story that i'm going in tomorrow (12/6/99) so, I shall update you, as soon as I can.
7/29/00 Update: Ok, so it's taken me a long time to update my story, this is because I forgot my password to get into my web site!!! Duh!!!! But now that I'm here I can let you all know what's been going on since last December.
Well, I went in to have my surgery, the following is taken from the Operation Report that� Dr. Schillings performed: Endometriosis on the left uterosacral ligament, a total area of about 2cm. However it was noted to be deep endometriosis. There was also a small amount noted in the cul-de-sac near the left uterosacral ligament. In the right ovary had endometriosis on the ovary itself, as well as it's junction to the sidewall, there were also noted to be adhesions of the colon to the left sidewall. Dr. Schillings removed as much Endometriosis as possible, and the procedure went well, and I was back at work within a couple of days. Dr. Schillings prescribed continus birth control, so basically I wouldn't have the normal 7 day break, and my periods stopped, (let me tell you, It was great not having to deal with them for a while!!)
So, I was 'pain free' until around the begining of June, I started to have the familiar 'achy' pain, and then I had a bleed. I knew that this wasn't something good, so I made an appointment to see Dr. Rota (my GYN). He said that it sounded like the Endometriosis was back and referred me to see Dr. Schiliings again. As it happened Dr. Schillings has moved from the office where Dr. Rota was and now practises in Allentown, PA (about an hour and a half away from where I live). So, I made the appointment and went to see my friend and specialist Dr. Schillings, we have agreed to give the Lupron another go, so, last Thursday, 20th July, I had my first shot of a 6 month course. I haven't seen any effect yet, but it's really too soon, I will of course keep you updated (as long as I remember my password!!).
10/25/00 Update: Well, I'm back with some new information on what's been going on. Well I'm in my 4 month of Lupron, and unfortunatly it doesn't seem to be working, I'm still in a lot of pain, and now I'm getting all the menopausal symptoms too. Well, last week I was watching the TV and heard on the news that that the University of Illinois is doing a test on a drug called Femara, it is used to treat Breast Cancer, but they are testing it out for Endometriosis sufferers as it blocks the body 'making' any estrogen. So I am talking with Dr. Schillings about going on that drug. We are still looking into it to see if it would be a good match, but I'll keep you posted. Not really much else going on, so I shall update you all again soon.
By the way, if there is anyone out there reading this that had Endometriosis and is on Lupron, I would really like to hear from you to see what side effects you are having with Lupron. I have started having really bad dizziness and tingling (like pins and needles) and I'm curious to see if anyone else is having the same.
11/28/00 Update: I found out 2 weeks ago that unfortunatly I am not a good match for Femara, I would have to stay on Lupron while on the Femara, and because of the risk of Osteoporosis getting worse, my doctor and I have decided not to go on the Femara.
Last Tuesday I started bleeding heavily and went to see my doctor the following day. I had an internal ultrasound and we found that I have Cysts on both ovaries, (as you probably know with Lupron that shouldn't be happening) my doctor also tried to perform an Endometrial Biopsy (this is where they take a sample of the lining of your uterus) but because of the extreme pain it was causing me, she couldn't complete the test (I was pretty much crawling up the table!!). I am now scheduled for my 4th Laparoscapy and I'm also having a D&C performed at the same time.
I'm going to have to wait and find out what the results are from my Laparoscapy, before deciding what my next step is. Depending on how bad the Endo is, Dr. Schillings will probably try and corterize and cut out as much as she can, but if it's too bad then my next step is a partial or full hysterectomy. Because I'm only 25 this is a decision that Dr. Schillings and I are going to have to consider very carefully. However, my Mum has found out about a drug in England that is an Implant that is inserted under the skin in the abdomen. She has spoken to a woman that has Endo and this drug has proven to be effective for her. I am hoping to speak to this doctor to see if this is a possible match for me, obviously I shall keep you all updated of this.
3/5/01 Update: Sorry it's taken me so long to write this update, but i've been busy feeling great, going out and 'catching up' on the fun that I have been missing out on in the past couple of years!!
Well, I went in for my surgery on January 24th. My doctor and I were very surprised in the amount of Endo that she found. It was not as much as expected, she was able to cut out all that she could see, and fingers crossed it won't grow back again. I haven't felt this good in a long time, I have had very little pain, and even when I have had pain, it's been so little that I have been able to deal with it with no pain killers!! I haven't had any Percocet since 26th January, and that's been a huge relief!! I was concerned that I might have been addicted, and was worried that it would take me a while to come off of them!
I can honestly say that I really feel great, my mood has improved greatly, I'm sleeping much better, and I'm out with friends all the time. Obviously I will let you know if that changes, but right now, I am hoping that the Endo is gone forever, and I can start enjoying my life again.
3/21/02 update: Well, it seems that I'm really bad at updating my web page, I have to get better at that!! Well, I guess about 6-8 months after the last surgery, I felt great, I was going out with friends, and catching up on everything that I had been missing out on. Well, unfortunately that didn't last very long, the pain is back!! I'm currently in the middle of going for all kinds of tests before going back to see my specialist and friend Dr. Schillings. I am scheduled for surgery on April 5th. My best friend Carol has been bugging me to go and see a Urologist forever now, as she was diagnosed with IC (Interstitial Cystitis) as we sometimes experience the same kind of pain, well I finally went to see him, (Thank you Carol!!!) and he thinks that I also have IC, so I'm going in to have my bladder expanded, to find out if that's exactly what I have, (aparently it's very common for women with Endo to also have this disease). Apart from that, I'm back on Percocet, and trying to deal with the daily pain.
As always, thank you for taking the time to read this, and if you are a sufferer from Endo, or know of anyone that is, I am praying for all of you!!!!
