Posted by walkstheline on 2006.09.28 at 15:05
I am new to this community, but not to this condition..I just finally wanted to reach out and share my story with others who will understand.
I am 38 years old and was diagnosed with endo 8 years ago. The way it was discovered was when I experienced excruciating abdominal pain, on my right side, and vomiting. This had happened to me the year previous, but it had subsided in a day, and I assumed it was a 24hr flu. This time, however, was much worse and I took myself to the hospital. I was admitted, put on fluids and given pain medication. No diagnostics (besides blood work) were done when I was admitted, and they planned on getting an ultrasound the next day. Well the next day, the pain was much less, I was no longer nauseous- and the Dr was ready to discharge me! I insisted on the ultrasound before I was discharged. When I got the results of the ultrasound, it was discovered that I had a 5cm cyst on my right ovary, and I was referred to a gynocologist. I had surgery to remove the cyst, which was an endometrioma ("chocolate cyst"), and I was diagnosed with endometriosis. This information was given to my mother, and not me directly after surgery, and any question I had about the condition was met with condescension. I was then started on Lupron. Aside from the side effects of the lupron- hot flashes every hour on the hour- I was physically comfortable for years.
Maybe I was distracted by my depression. I had to stop working in 2000 to be treated for depression. I had been depressed before, but never medicated. This time was different, and I began medication. After a battle, I was able to go back to work. I got accepted to vet school, and off to Minnesota I went.
I began having pain again in 2004- more of an aching constant pain in my lower back. I went to a gynocologist in Minnesota, and he suggested that I have a laparoscopy. I had developed adhesions, and this was causing the pain. I also had edometrial lesions cauterized at that time. I was comfortable again until 2006- right before I was ready to graduate from vet school. I began having more generalized abdominal pain, stomach upset, and fatigue not associated with my period . I was told by my Dr that I would need to have a hysterectomy- which I was going to do. But I was in Minnesota, my family in NY, and was finishing my last year in school- it was very difficult to fathom - besides being alone, but also facing the possibility of hysterectomy. At this point, I was desperate- I felt like I was being possessed- and confused...I know that the pain can come back even afer hysterectomy, but at this point, I felt like I was at the mercy of my hormones, and that this was what was responsible for my depression. So, part of me just wanted to have a hysterectomy.
Needless to say, I did not have a hysterectomy. I had been feeling better, and thought that I would be able to contunue and take care of things once home . I graduated from school, and came back to NY- and I began an internship in an animal hospital. I was fine for 3 more months, and then the pain and stomach upset became unbearable. One day I had to leave work because I was overcome with nausea and extreme abdominal pain on my right side (sounds familiar?) But nothing was found at the hospital, and I was secretly thinking it was anxiety. (although having depression- I have never experienced anxiety attacks) I was so involved with my new job, that I thought that the long hours and stress were causing my stomach upset, and feelings of being overwhelmed (i would cry all the time!), and the pain! I think I was in denial, and scared- I just got this internship, had a committment to the hospital, and need to make money ( I am in serious debt!) But this time the pain was a constant burning like pain up high near my kidneys on both sides, extending to my back. I had to leave work and deal with this..... So here I am, I have suffered another very serious bout of depression, as well as having to get help for my endo. This was not easy- I went back to my old gyno (after being away for 4 years) thinking she would be most helpful since she diagnosed me back in 98. She just wanted to start me on Lupron to see if it helped- I did not want to "just try lupron" I was hell bent on having a hysterectomy at first. After being lectured that I don't know what I am asking for , I needed to find another Dr.
I found another gynocologist, and i am having another laparoscopy. This took over a month to arrange, and have since gone back on lupron because of the pain while waiting for surgery.
Having depression, it is very easy for me to feel like I am going crazy...I know that the endo is real, and causes pain, but it is so tiring to deal with. I just want to be able to get on with my life as a wife and a new Doctor. I just have to keep plugging along.
To all of you out there- be strong, and stand up for yourself.
Posted by destynnee on 2006.09.14 at 17:11
i called my dr... ( Read more...Collapse )
Posted by squishy_diddles on 2006.08.29 at 13:33
Just wanted to say hi from a new Adenomyosis survivor
i got diagnosed two weeks ago with Adenomyosis
Diagnosed in March with Adhesions and Fibroids
im 28 and a mother of 2 daughters and i live in Australia (btw my name is Jenna)
I'm now going to the gynae on 5th of september to get scheduled for a full hysterectomy
Posted by destynnee on 2006.08.28 at 14:20
its official i have lost my job... because of my endo..... kill me now
either by resinging...
or them firing me...
i am screwed past any hope.. :(
oh yeah crossed posted
Posted by rosiecako on 2006.06.12 at 13:16
I recently found out that I had Endometriosis. The doctor says it isn't at a bad stage. The thing is, they won't do a laparoscopy unless they think the endo is bad enough. He says he's sure I have a minor case of it, but really, what proof is there? All he did was do a physical examination of my uterus, etc. and I told him my symptoms.
Anyway, my pain has been getting worse in the past few weeks and I'm worried that maybe it's getting worse. I can't see my doctor until August (I have a second pap test then, as now they noticed some abnormal cells growing).
Anyone have any advice or anything? I'm scared as hell!
Posted by ramblng_tigress on 2006.06.08 at 11:33
has anyone here, with endo, has ablation done?
i've read some stuff about it, and i'm contemplating talking to my doc about it some more...
problem is, when i addressed it at first, the doc told me it DID NOT help endo... which the reports I've read argue against
so, has anyone had it done/does it help or work?
also posted in endometriosis
Posted by snazzicazzi on 2006.06.01 at 22:42
OK girls another quick question:
This scared me half to death earlier.
I know its normal for women to have some kinda discharge when they are not on their periods. 2 days ago i noticed a pinkish (blood) in mine. Then today a lot darker blood. Now im on the pill and im not spotting at all. This also isnt regular as its only happened like 2 times in 3 days.
Never happened before - but it scared me!
Mum said go see a doctor but they arent the easiesy people to get an appointment with and i wouldnt have a change before monday
Any Clues??? as to why ?
Posted by snazzicazzi on 2006.05.26 at 19:24
Im sorry to crash onto your site like think but I needs some advice.
IM Carys and im just 20 years old from Hampshire in England
Ok here is my scenario
For a long time now i have had problems with my stomach - bowels etc. Going from one extreme to the other such as Diahorrea to constipation and mucus (nasty i know).
I also about a year ago suffered from heavy periods which were very painful and bad stomach pains even when i wasnt "on." This i eventutally got used to but couldnt bear the pain and went to see my doctor - she took a stool sample and said i was fine (suprise suprise).
However the stomach pains got increasingly worse and increasingly regular. So i went to a different doctor who i was recommended and she was excellent. She put me on several types of tablets for IBS none of which really worked.
By this time i was beginning to find sexual intercourse painful and felt so bad when me and my boyfriend got together. The doctor recommended an internal examination and several tests which she carried out and gave me the all clear but mentioned endomitriosis (sorry about the spelling) saying she knew i was worried about it. Now whilst i had read about it i had not mention it to her. So i began to worry.
She booked me in for an appointment with my local gynacologist - and that appointment will happen on the 12th june (3months later). However now sexual intercourse is almost impossible due to the pain. My periods last approximately 2.5 days between my Pill and even wearing a tampon this time round was very painful. Also my stools havent changed i still get upset stomach regularly and its still putting me off eating breakfast - and sometimes dinner for fear of being ill again. The stomach pains have grown from and ache to more sharp pains and come and very unexpected times as well as being very bad when im on.
Sometimes the doctor asks you "does the pain wake you up or do you wake up in pain?" Well i have never had an answer to this question but the other day the pain woke me up.
Now im not too sure what advice im after. Other than does all this sound familiar? Previously i read a few forums on this subject and worried myself so much. I dont think my appointment will be more than an internal examination and a scan - which then my lead to an operation (laperoscomy?)
Can they find an answer without one? And can they (if need be) serve a diagnosis?
Ive come here because you have the experience and you have a diagnosis which i dont but desperately crave - whatever it is.
Sorry if i sound silly but no one seems to understand that im in pain a fair bit yet no one knows why. My boyfriend is VERY understanding but i know it must be frustrating for him too.
Posted by angel_wiings on 2006.04.05 at 12:31
Hi there everyone,
I am new here... just joined. My name is Sharyn and am 33. I live in Australia. I found this community the other day and joined.. thanks for having me here.. I sat and read so many entries by so many women here and the one thing that really jumped out at me, whilst reading them, was the acceptance of western medicine. The accpetance and the high number of you that are using hormone treatment as a measure to combat Endo.
I was diganosed with Endo at the age of 22. After years of crippling periods, and years of pain, I finally had an answer. Isnt it a relief when you finally find out there is REALLY something wrong, and it is not all in your head?!!
Initially I undertook the 6 month course of hormone treatment in the form of Synarel, a nasal spray. My hair fell out, blood noses, migranes and the rest of the side effects that came with this course of treatment. Within 4 months of completing the course, the Endo was back with a vengeance!! Into hospital again, and this time, under the care of a specialist. Laser surgery this time. No more drugs.
I was told at this poin t(thru word of mouth) about a fantastic Chinese Herbalist who worked in the city , in Melbourne... who speicalised in gynecology and Endo.. So off I go... My life was about to take a turn, little did I know... Never had i seen herbs before, rows and rows of them all stored in plastic containers on shelves in this tiny office on the third floor of this building. To cut a long story short, I drank herbs for 6 months.. and I fell pregnant with my daughter, who is now 6.
Ladies, i SWEAR by Chinese medicine!!!!
For any of you out there who have not tried it, please do not shut yourselves off to the idea. It is truly magick... if it were not for the herbs, I would have my daughter today..
I have recently been diagnosed with Adenomyosis... which is Endo, internal, in the walls of my uterus. I have been back into hospital 8 months ago, and under the care of my specialist, have had laser surgery again. I am going back to see Steven, my herbalist, in 3 weeks, as the flooding periods have returned again. I trust this with my life... As much as it is REPULSIVE to drink, the herbs are the only thing that gets my body functioning properly.. and the blood to circulate as it should and the clots to dislodge and shed from my body.
I guess I just wanted to make a post here, to let you guys in on another alternative of care. One that I believe is magick.
Hoping to make friends here too, we are all in the same boat.. and its not easy.
BIG hugs to everyone....
Love to all.
Posted by destynnee on 2006.03.29 at 22:02
I was once a second in a two year relationship (open relationship). I have endo, ocd, mild to severe depression, anxiety and panic attacks... I am now kind of getting my feet back into the water of dating.. I am also a submissive person, and into bondage and s/m... I find it hard sometimes to tell people that I am poly, etc... Or those that I have feeling for if they are already in a relationship to tell them as well... That I have feelings for them... Have any of you had issues with this, or how did/do you go about dating and such.. Esp for any of you who may have health issues?