Another with Endo.!!!

Well I dont know where to start. Fistly I started getting painful periods when I was 12 years old. I just assumed that it was "normal". When I was 16 nearly 17 I had the worst pain so went to the GP & he reffered me straight to the hospital. Like Astrolady, the surgeon came along & thought it was my appendix at first. Then the pain went away so they sent me home. It happened again, so back to the GP!!! He referred me to a private Gyn/Ob who put me in for a laparoscopy. Into to hospital I go, having to sign the consent forms, to give them permission to do whatever they find while under. Very distressing at nearly 17years old. I remember waking & get the diagnosis that they 'never found anything'.

So ok, it settled down for a while, with me just taking some Naprogesics until around July 2002. Went to the GP, she sent me for an U/S which showed a dark 3cm growth on my left ovary. Then sent a referral to the Base Hospital for me to see a Gyn/Ob there. By time all this came around it was October 2002. Finally my appt. came around so up to the Hospital I go. I was very disappointed in the Gyn/Ob there!! She did an internal, didn't even pull the U/S out of the envelope, only the findings then said, " You have like endometriosis, but not endometriosis as such! And as for the cysts. Cysts come & go all the time in your cycle!!!" So I was waiting 3 months for a 15 min appt with her, for her to tell me that if I had pain, to go & get some Naprogesics. Very disappointing!!!!

So I kept on going along for the Nov & Dec. It was January & I was at work. I went to lunch, fine feeling great, then came back from lunch with instant pelvic pain, just like someone switch it on!!! I felt like my pelvis was hanging to my knees!!! I felt like I was going to vomit, I was getting the sweats, & was pale. I went home and the pain was excruciating!! I called my B/F to come home from work in his lunch time to take me to the GP. During that time waiting for him, I couldn't sit down or lay down as it hurt to much. I had to stand with my hands resting on my knees. I was so hot & felt like I was going to pass out so went & got into a cold shower until he got there.

Went to another GP who asked what the Gyn/Ob at hospital had said. I told him & he said Naprogesics aren't strong enough. So he gave me Indocid anti-inflammetries & Panadeine Forte. That settled the pain down alot. Then he said, as soon as I feel a twinge of pain take an anti-inflammetrie. That is fine saying that, but when Feburary came along because my cycle can go from 26 - 33days I couldnt pin point when, so when I felt a twinge of pain one morning at work, I left work and went home to take one of the tablets. I live about 5 mins from work then, but by the time I had got home I could hardly walk up the stairs, and so it went all over again. Back to the GP who referred me to a private Gyn/Ob. I guess the most frustrating thing with it all, is I felt like no-one was willing to "help me". I am sure all of the other people with endo can relate to that.

So off to Dr Waterfield, Gyn/Ob I go. He is in Cairns. I would highly recommend him!!! The visit went well, with him doing an U/S in his rooms & said that I had a 3cm "chocolate cyst" on my left ovary, which was probably caused by endometriosis but the only way to know would be to do a Lap.So I went Private/Public but he only operates at the Base every 2nd Thursday so he had just had his day, the next fortnight was booked up with Laps and C's, so it would be the following fortnight.

The day came along really fast which was a relief. I went in at 8am & was back out at 9.30am. I never saw the Gyn/Ob again as he was busy but had a follow up cons. in his rooms on the Tuesday to get the stitches out. I was so saw, and started vomiting from the Pethadine. Yuk, with stitches in and all. I guess that was the worst thing of the whole lot that, and the pain when moving!!! I said to B/F that with the last Lap, I wasnt nearly as this sore!!!

I go back for my visit on the Tuesday to see what the diagnosis was. He said when he got in there with the Laproscope, the cyst was 10 cm and was just starting to adhere to my bowel!! When he went to grab it with the forceps, it ruptured!!! So I guess I am a very lucky girl as I was only in day surgery, and know of another girl, which that happened to and she ended up in hospital for 2 weeks with septicemia. Also he said that I did have endometriosid. I guess it was invetible though as my mum has it, she has 3 sisters, they have it & my Nan also has it. So I guess it runs in the family!!! He said he had cleaned up the endo as much as he could but there was still some surface endo there, so he upt me on a 6 month treatment of Zoladex to give it a chance to clear up. I had my last shot on August, have had 3 periods since then & now am starting to get pain again!!!!!! So I am going back to the Gyn/Ob at the end of Feb. I am just hoping that it isnt another cyst, but this time on my right ovary!!! I am thinking positive & having faith. He said that if I wanted to have children that I should be at least pregnant in 3 years as he doesnt like my chance after that, and at 30 a womans fertility rate starting dropping anyway. Yes I do want to have children, or at least one child. He said, that if I had had my children that they would have done a hysterectomy when I was under & that it was only that I had not had children that they didnt. I was so happy to have finally found someone who wanted to help & 'fix' me, that I could have given him a big KISS!!!! =D>

So I am sorry if this is soooooo long, but this is my story & it would be great to hear from other people who can relate to this. It is so good to read other peoples stories on this forum, as I think alot of people dont understand as they can't relate to it.

Take Care for now
KT250 :D

Hi kt250

You have probably read my story from the boards anyway but you can read the whole version at www.theastroweb.com/endo/

Sounds like we have very similar stories but yours has unfortunately dragged on for much longer. I am lucky to have found a GP that would listen nearly straight away.

Love :smt049

Hi Astrolady,

I went to your page from another post last night before I joined & read your webpage. Its great. I wish you all the very best of luck, & great wishes with your new little addition.

Thank you for replying so promptly. It is just so great to have people to talk to.

Take Care
Love Kt250 O:)

Hi kt250

Im sorry to hear your struggle with your endo diagnosis! I was lucky to have a wonderful Dr who diagnosed my endo in 2002. I have had 2 laps initialy one to remove my endo and another in 2007 because my Dr thought it had come back cos I was still experiencing my pain. When I woke up and was notified there was no endo I was devistated cos I didn't know what this meant! It turns out that from where my endo was removed I still have what I understand to be nerve pain. What it means is my nerve endings from where the endo has been removed are still sending messages to my brain that the endo is still there resulting in the pain. Its like when people who have had their leg etc removed yet they still feel pain where there in no leg. Its very hard to deal with I have tried several treatments yet at this stage nothing has worked. My Dr has referred me to the pain clinic at our hospital and is looking at Zoladex as an option. What was it like? Would you recommend it?

Thanks

Hi KT250,

What a terrible ordeal!
I too have endo, had a lap when i was 20 to confirm it. Thankfully I don't suffer from that severe pain that so many women do. When my Gyno told me that i had it, i had no idea what it was? I asked if i would be able to have children and he said yes, but i should try and start before i was 25? When your 20 it sounds like YEARS away, but when you hit 25 and the last thing on your mind is children - its pretty tough!! Anyway I decided that I would not try until I was completely ready - endo or no endo! So now i am 27, I have an amazing DP and we have just recently decided the time is right. What will be, will be :)
I'm so glad you found someone great to help you. It really makes such a difference. Wishing you all the best for the future :goodluck:

I was diagnosed with endometriosis at the age of 18, before my doctor diagnoised me..I diagnosed myself after reading a health journal that was floating arounf the library at mums one day.
I had terrible periods from the age of 12, to the point where I would be bed ridden for the first 2 days of each period, with severe cramping and excessive heavy and clotted bleeding...not to mention my period would last for upto 12 days of continuous heavy flow!!!
I ended up having a laparoscopy to rid the endimetriosis and recovered well and in no time my period s had greatly improved and become "normal" and I finally felt like I could live again when I had my period and carry on as though I didnt have a period at all.

I fell pregnant at 19 and had a sucessful ad healthy pregnancy and have no problems derived from the endimetriosis since. I heard from someone that pregnancy can better the chances of it returning...or at least the severity of it.

hi KT250,

reading your story was just like looking at my story.
i was about 21 when i started having intercourse pain and just like you i have visited numerous gp's and gynaes who also told me it was nothing and just go home and have a few tablets.
over the years the pain progressed and since going off the pill in dec 06 i also have pelvic pain, period pain and ovulation pain.
what makes me angry is that i waited 10 months to see a gynae on the gold coast and i left in tears cause she belittled me and said there was nothing wrong and i should not go back to see a doctor, and mainly because i had no period pain and no pain on examination.
then i went off the pill 2 years later when i felt it was time to try for a baby, and i realised that i actually do get bad period pain.
I went to see a gynae in my new town when i was 26 and he suspects i have endo cause i have almost all of the symptoms, but sent me home to try for a baby for 12 months.
Well 13 months has passed and i'm not pregnant and we have our second appoint with him in the morning, so i am very nervous but extremely optimistic that i will finally get some news, especially since i will be 28 in a few weeks and the age thing daunts on me also. (getting close to 30 would probably not bother me if i wasn't TTC.) ha ha it's funny how things like that can make you worry about getting older..
i have a fear of hospitals and freak out at the thought of having a lap, but at the same time i worry that if i do have endo, i have had it for many years and worry if there is any damage done, so i'm hoping they will do this soon so i can get some answers oh and a baby.
good luck with everything.