misdiagnosed

I had my surgery on 5/6/03 removal of my uterus only. I was told that I had adenomyosis which has limited treatment options. Only hormones or surgery. I rejected the hormone option because of past bad experiences and I was given to understand that a hysterectomy was my only other option. However, yesterday at my followup appointment with my gyn I was told that the pathology report indicated that I had small fibroids and a small cyst. I then went and got the report from my ultrasound that I had done pre surgery which suggested that I get a pelvic MRI.It did not say that I definitely had adenomyosis. The MRI was never suggested to me.
The bottom line is that I now feel that I had this surgery for nothing. I feel I was misdiagnosed and that I might not have needed a hysterectomy after all. I have not yet discussed my feelings with my doctor because at the time that she told me the diagnosis, the reality had not sunk in yet,that there are other treatment for fibroids and cysts.
I am devastated. I am 41 years old and I have never had children. Has anything like this happened to anyone else? My heart is broken and I don't know what to do.

S.

Saral,
I am sorry to hear that you are feeling this way. You must feel that a mistake was made and now you have all regrets. I am wondering if you had severe symptoms that prompted this hysterectomy. Sometimes the only way to remove fibroids is through surgery of some kind. I can only say that for myself, I feel that the hysterectomy may improve my quality of life. My fibroid was huge and was causing massive bleeding. I had to get blood transfusions just so I could have the operation. I don't know what your symptoms were, but fibroids can be pretty nasty. They can grow back as well if you get them removed. It may help to have a talk with your doctor about this issue as it is causing you grief. You need some kind of closure.
Take care, Karen
TAH 4/15/03 kept ovaries

Thank you for your support, Karen

My main symptom was constant pain ans some bleeding between periods. I never bled so much that it was a problem. I definitely needed to something about it. I would have have liked to have tried some other options if I had known I had them.

I hope you will continue to feel better and do well.

S.

Yes, unfortunately me. I was told about 3 yrs.ago that I had fibroids,so that was the cause of my unbearable pain,my bleeding to death each mo.,which also caused me to be anemic......Then about 1 yr. ago I was also diagnosed with the adenmyosis,& told that I didn't have the fibroids after-all,,,so I was like O.K. where did they go????? Then I was told that I probably didn't have the fibroids to begin with, even though they were supposedly seen on a sonogram.........Of course I progressively got worse & was told that they could try drugs which I did for about 3 mo. NO HELP !!!!!!! So I had already been told about the hysterectomy,& was also told that was the only other option.........When my pathology report came back,guess what??????NO ADENMYOSIS... :confuse: I already have 2 beautiful kids,THANK GOD,,,,,,,,,,I guess it's just the point that I was apparently told wrong not once,but twice........
Then it was explained that I had something called "hydrophy"????? Not sure if I'm spelling that right???? Anyways, It's compared to when a person has high blood pressure,& their heart works overtime to pump blood,,,,, they said that's what my uterus was doing.... But really & truely,how am I suppose to know what to believe.....After a while you get to where you don't know who to trust........
Hope this helps in someway,but by no means don't ever think that you are alone................

Hi Saral-
You need to speak directly to your Gyn doctor. Ask why he/she did not order the MRI as the radiologist suggested? It is possible the MRI would not have yielded any more information than the ultrasound did. Indeed, you do need to be your own advocate and always ask for reports. It's important to chose a physician you feel comfortable with and can communicate openly with too. It does sound like your particular pathology was difficult to image. Even when receiving a diagnosis of cancer, it is important to take some time to investigate all options.

(((Saral))),
I am so very sorry you are just finding this out It is so hard to understand why more options weren't presented to you. When I had my Hyst in Jan 2000, I kept experiencing worsening pain. My Dr kept saying it was *healing pains*...he finally ordered a Transvaginal U/S @12 wks Post. It revealed a large mass on my right Ovary which was very enlarged & covered w/ multiple blood-filled cysts. My Dr scheduled & performed an RSO to remove the Ovary (thinking it was the cause of my pain), & to find out the origin of the mass. Which turned out to be Scar Tissue from surgery but it was adhering my Ovary to my Vaginal Cuff...
Unfortunately, my pain never left & has *increased* over the years.
I ended up undergoing emergency surgery several weeks after that for Bowel Obstructions from Scar Tissue. After, that the pain again worsened & my Gyn said there was nothing else he could do. Thinking he was missing something, I went & got all my Op/Pathology/test results from the hospitals. I discovered that my right Ovary was in the same condition, minus the mass, at the time of my Hyst. I had asked my Dr to pls check my Ovaries exp. the right b/c that was where a lot of my pain came from. If one was bad, I OK'd it to be removed. When I awoke from surgery, I asked about my Ovaries 1st thing, I was assured at how healthy they were, so they were left in.
To read that report, knowing the conversation between my Dr & myself, felt like a kick in the gut:cry: All I could think of was how I could've avoided the 2nd surgery...how all these surgeries left me w/ severe Chronic Pelvic & abdominal pain due to extensive scarring & nerve damage. It took awhile to reel back from that. I focused all those negative feelings/energy into Advocacy for myself & my ((Sisters)). I started researching anything & everything I could find
By sharing my experiences, my research I wanted to help educate others on all the possible outcomes this surgery or any other Gynecological procedure/surgery could entail.
With educating myself thru research, I started feeling empowered..so when you hear *Knowledge is Power* it's true. I'm sorry to carry on (((Saral))), I just felt touched by your story & compelled to share mine. I know you are hurt more than I or anyone else can understand but at some point there will come healing....
My thots & prayers will be w/you as you come to terms w/ this. Pls know your ((Sisters)) are here for you anytime
((((hugs)))))

Dear Sheri,
That sounds truly awful. I hope you will find some solution to all the pain you are having. Thank you for thinking of me. The most positve thing to come of this is that at 2 1/2 weeks post op I am feeling better than I was before, physically anyway. I appreciate the support and the information that I have received from this web site.
S.

Your very welcome (((Saral))) I am so happy to hear you are feeling better than ever
I've always believed all things happen for a reason Good Luck to you..I look forward to reading your posts/updates....(((hugs)))

My hyst (TAH/BSO 4-23) was primarily for adenomyosis, doc showed me the activity from the ultrasound at my Jan. visit, had a D & C last June and the activity level was very high. Think he was being preemptive, and he did find fibroids and extensive endo which was undiagnosed and I really didn't have symptoms that were too bad, but they were getting worse with each month's period. More cramps, worse bleeding, etc. . . I know I first questioned whether I should seek alternative treatment, but decided that this was likely the best course of action. I pray that a woman doctor didn't do this to you knowing that you were interested in having children and that you will be well, both physically and mindfully soon.

Good luck in your healing process.

Mary

Sara,

I am so sorry this happed. I too have never had children (i do have a beautiful stepdaughter) and was misdignosed for two year as having endometreosis. On my reg. check up this pasted December my regular Dr. was on vaction and I had to see someone else, well she was shocked and sent me for a cone right away because the cancer was by that time visable to the naked eye. If I had found out sooner I may not have had to have such a major surgery. Now my husband an I will never be able to have a child together.