DES Daughter often misdiagnosed; Having another surgery
Hey all, seems like all us DES daughters have similar problems.
I started having issues after the birth of my 2nd child in 1984 then the problems started. Misdiagnosed from 85-98 with IBS/Spastic Colon. MRIs/CT scans/Ultrasounds you name it I had testing for it. These tests continued for so many years.
My symptoms started as abdominal pains and bloating then progressed into heavy vaginal bleeding with thick tissue discharge, blood in urine, recurrent bladder/cystitis, then into pelvic pain that was so bad I could not walk --- it was worse than labor contractions. The doctors just kept misdiagnosing and loading me with meds for all these years.
In the meantime, (from 93-97) I had 3 laproscopies with what they called "fibroids" but found out later they were not fibroids (tell you about that later). The pain just got worse--I could not walk at all. The heating pad was my best friend all day and all night.
By Dec 1998, I had a total hysterectomy "vaginally" with ovary removal. They found cysts on my ovaries so he made the decision to remove both of them. He said they were too bad to keep either one of them b/c of the tissue that concerned him to send to the lab. They returned benign. Then my doctor prescribed estrogen.
Immediately, same week after surgery I called my doctor b/c I was having green discharge from vagina. The nurse would not let me speak to the doctor and she made the decision to call in an antibiotic. Within one week I had a terrible urinary infection and went to the closest clinic b/c I was passing blood. The physician said I had Klebsialla and probably contracted it from the catheter when I was in the hospital. My breast were hurting so bad along with all these other problems so he lowered my hormone strength to the lowest dose which helped my breast pain.
The other problems continued but by 3 months later (March 99), now there was green discharge seeping from my navel (imagine that?). Mucous from my rectum worsened and my bowels were very loose. I knew there was a terrible infection just growing worse in my body. March 99 my husband took me to the ER because I was in the worst pain of my life. He paged the OBGYN and DEMANDED that he meet us there. My OBGYN met me there and he called in the GI doctor and a Urologist. The OBGYN said that he would have to have a reason other than pain to admist me or insurance would not pay and that was the reason he called in the GI doctor to rule out what he thought was a colon problem. They did their testing first (colonoscopy and the cystoscopy). The urologist said all was fine. The GI doctor attempted 3 times to get his scope into the colon and noted that he could not and retracted because my colon was looped. GI doctors diagnose was IBS "again".
My husband demanded the OBGYN to open me up. So when I woke up the OBGYN was sitting on my bed apologizing to me that he should have not put me through all this pain all these years and he should NOT have done the hysterectomy vaginally because he would have seen what was inside of my abdomen. There were cysts (large) ones connected in with the fibrous tissue. He said the tissue was tan and dark and he was concerned. These tissues were basically strangling my organs. They were wrapped around my small intestine, my colon, the bladder, the ligaments in my right leg. It was horrible!!! He had to call in another OBGYN to attend him in surgery. Then he told me he would not charge me anything for the surgery or hospital bills (or the other doctor's procedures). I should think NOT!!!!!!!!!!!!!
I want everyone to know that these things DO NOT ALWAYS show up on MRIs with or without contrast, CTs, ultrasounds, no matter what if you feel like something is wrong and feel like you have an abscess in your abdomen with heat and pulsating pain and nerve pain, demand that your doctor explore inside!!!!! The best way I can describe it is an abscessed tooth. I felt like I had an abscessed abdomine. I understand that adhesions are a normal healing process BUT sometimes there are things that are growing in there and get infected then cause pain. By the way, I am always told that FIBROIDS grow only if you have a uterus so these things were not fibroids just big ole' cysts because I did not even have a uterus or ovaries when this happened even though his surgery report notes removal of fibroids and cystic tissue along with specimens. Anyway, they all came back benign.
I quit taking the estrogen all together around 2002 b/c I had dense breast tissue growing and I had to end up going to a specialist/surgeon to follow me with my breast problem. Everytime I go they have to take 2 mammograms. I hurt for months after these things. I just had one in April and now it's September and I am still hurting from the mammogram. They want me to come back in 6 months which will be October 2013.
Well anyway I was a new woman from March 1999 through 2005 I never felt better!!!! Great!!! After all that stuff removed it was Heaven sent.
In 2005 slowly but surely blood in my urine, treated with antibiotics since then, take AZO a lot, and self treat myself by watching the foods I eat that really irritate my kidney (like asparagus and cabbage really sets if off I guess b/c of the chemicals in these foods). Same symptoms starting again.....now I am up to the point of pain level of 7 to 8 and taking meds.
I have surgery scheduled for 9/18 by a general surgeon. We'll see what's starting up in there this time. OH and also I had lymphatic testing done waiting on those results to come back in about 2 weeks. For some reason, my estrogen levels are off the charts, along with parathyroid cysts and thyroid cysts starting.
I am 50 yrs old now and shouldn't feel this old and all this stuff happening to me. Oh well, until then, keep me in your prayers for the surgery and testing. I have so much more to tell you but getting a little sleepy. By all for tonite. Jenn.
Jenn, I'm so sorry you've had to go through what can only be described as a nightmare! I do hope that you finally get to the bottom of your health issues and that you will be on the road to recovery very soon.
My thoughts and prayers are with you. God bless you and give you strength.
Keep us posted and hugs galore, xoxo.
Your title snagged me in! I'm a 39 year old DES granddaughter. This year we've finally out the whole big mess together and figured it out. It's been amazing to put the puzzle together completely after the last 20+ years of "female problems" for me not to mention my sister, mother, aunts and cousins too. I also 110% agree with your message that you need to listen to your body and make the drs listen to you!
Re: DES Daughter often misdiagnosed; Having another surgery
I just wanted to share something with you. We have had a few members over the years who have had fibroids AFTER a hysterectomy--one even had it happen twice. It is VERY rare, but apparently it can happen and their doctors confirmed it was fibroids. So, if pathology showed you had fibroids, then they really could have been fibroids and not cysts.
What type of surgery are you having this week? What is the general surgeon looking for? With the hormone issues you are having, as anyone ever mentioned Ovarian Remnant Syndrome to you? Have you ever consulted with a doctor who specializes in hormones or maybe an endocrinologist?
Re: DES Daughter often misdiagnosed; Having another surgery
I know we have moved this discussion a few times (sorry!) but your discussion about genetics nudged me towards creating a new forum area within our community specfically to discuss GYN Genetics including DES.
I hope you will return here to share with us what you are learning about DES and how it is affecting your health. We learn from each other!