Preped for apendectomy then told endo..

Hey Ladies,
Had Tah 3/08 left ovaries and cervix. Found severe adeno on pathology. Have been having pain a a few months was told cysts on ovaries, and scar tissue.

Last week pain intensified, nasau vomiting, severe right lower pain. Sent to er, ct scan did not show appendix but they felt for sure this is what it was. was preped for surgery, then my dr ran and and put hold on it. Called gyn surgeon and found out the or report (from 2 years ago) showed SEVERE endo,. Now surgery was cancelled I am still in excrutiating pain, can not eat and was sent home told there is nothing they can do. I was not even given pain medication to take at home. I am beside myself. I called GYN and he s away till next week.

My husband wants to take me to another hospital and tell them what is going on. I truely can barely get up and can only tolerate some liquids for over a week now. Please help me on what I should do, if this is endo how do I know and what can be done. I never new I had it before. My dr that cancelled surgery told me to take tylenol,lol.. I was on dylotid(sp?) till yesterday afternoon, then percacet before I was realesed today.

The surgeon told me there was tooo much scar tissue to do lap, so there is nothing that can be done.

(((VioletFlame)))

I am so sorry you are in so much pain and dealing with all of this!

Something can be done, you just need to find a skilled doctor who can help you! Are there any endometriosis specialist in your area? While endometriosis can cause a lot of scar tissue, a skilled surgeon may still be able to do a laparoscopy to clean up the endo and adhesions. If not a lap, then a laparotomy could be done.

Endometriosis can inflame the appendix, necessitating an appendectomy. Hence, it was more critical for me to have my appendectomy that my hysterectomy! You will find many of us with endo need our appendix removed because of how it is affected by endometriosis. What explanation did the doctor(s) have for why your appendix could not be seen? Is it possible it was removed when you had your hysterectomy?

Since endometriosis and adheions don't usually show up on any test, right now it sounds like the doctor(s) is making an educated guess that the problem is one or the other or both. But something else could be going on. Are you running a fever? Have you been referred to some type of specialist? Did the surgeon suggest anything besides Tylenol and saying nothing could be done?

You know, going to another hospital might not be a bad idea if your GYN is away and you are in such pain. Does your GYN have someone filling in for him while he is gone? Do you have a good GP you could call? If so, you might give that doctor a call and explain what is going on, how much pain you are in, and how you are unable to eat. If your GP cannot help you, s/he could refer you to someone who could.

Who was prescribing the pain meds you have been taking up until now? Can you call that doctor for some help?

Pay attention to your symptoms and do not hesitate to go to ER if they worsen.

in there!

Thanks Weiser,
My appendix was not removed during hysterectomy, thats why they got or report to check. They said appendix does not always show up on ct scan. The dye did not make it all the way down. I actually remember the gyn saying there was so much scar tissue and because I have bleeding disease they could not remove the cervix.

My GP is the dr that stopped the surgery, told me there ws nothing that can be done, and discharged me with no medication at all. He told me the gyn was on vaca till next week. have a normal low body temp, 97 is normal for me, my temp has been 98.9 99 but they said it is normal. I was not referred to any other dr, no follow up plan, nothing!! Even the nurse during disharge kept asking me, are u sure u should go home, u can appeal the decision. I was treated so terrible after they cancelled the surgery yesterday almost like it was said I was a crazy person stay away.

If I go to another hospital it is one that is bigger and better equiped, my Hem/onc dr is there as well. I just dont know what to do, I dont want to waste anyones time, but I know something is not right and I cant even live right now. Just when I feel hungry I try to eat a bit of something and my stomach gets sick. even crackers. I do not have ibs, I have celiac and I am very carful what I eat

Thanks for the help <3

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Call your hematologist/oncologist and tell him/her what is going on. If you can get in touch with a doctor who knows you, s/he might be able to get something done. Not being able to eat and being in so much pain is not going to be good for your overall health. Did they at least give you fluids to make sure you are not dehydrated?

Any of your doctors should be interested in helping you! I am so sorry your GP isn't at least trying to help you until your GYN is back in town! Don't worry about wasting anyone's time! They will be paid for the services they offer you! You need to do what is best for you and , you need some medical attention!

thanks,
I am calling my hem.onc tomorrow morning. It is so upsetting to not have support. I particularly have a hard time just going to the dr, it takes severe problmes for me to go.

I tried to eat some toast and pain got worse so hopefully I will make it through the nite and get into dr tomorrow.

Thanks again for support <3

I had that same pain, when to the ER, thought it was appendicitis. They did a CT scan, showed "a couple" cysts on my ovary. Went to the GYN a couple days later she did a sono on my right side and said "We need to get you in the OR today" during surgery she found that I not only had a "couple" cysts, I had many that completely wrapped around my ovary and was cutting off circulation. She had to rupture it just to get it out. Then she say I also had endometriosis. Thats when all the problems start. CT scans/sono's dont always show what is going on from my experience. I would really listen to your husband and maybe go to a different hospital or is there another GYN on-call?? Hugs your way!!

I want you to know that you are NOT crazy. I have been treated for endometriosis for 18 years now... the first 13 doctors that I saw told me that I was crazy. You are the only person who knows what you are feeling. If the doctor doesn't treat you... get a second opinion!!! As I said... I went through 13 "specialists" who told me that pain was part of being a woman, it was normal, I needed to buck-up, peraps I should see a phychiatrist, etc. I have since been diagnosed with endometriosis, ovarian cysts, chronic pelvic pain, pelvic adhesions, and recently interstitial cystitis (endo's evil twin sister). You know what you are feeling... if they don't listen, go to someone else who will!!!

I totally agree! I had my son in march/09. That's when all of it started. I remember when I was pregnant they did a sono and saw cysts and thought they would go away. I kept going to my dr telling them my back hurt (I have/had a retroverted uterus) they did xrays, and said maybe I had some back problems. I would go into the er multiple times in extreme pain, nobody did anything bc I never had severe cramping or bleeding. I'm a very asympotmatic person, I'm never the textbook patient. From march until sept I had been just suffering in pain but dealing w it. The entire time I had a torsioned ovary like I mentioned! I was walking around w barely any bloodflow in my right ovary. My gyn could not believe how I had dealt w that for so long and not gotten more sick than I did. So yes! You demand to see someone and get it solved! Be outspoken! Its sad that women are shrugged off as just having "PMS pain", they need to teach these dr's to listen!!

I have been really lucky, considering. I found my current doctor about five and half years ago. Dr. <>. He specializes in not only female problems, but how to solve them in a non-envasive way. I had been put on so many different hormone therapies after the doctors found out I had endo... they stopped there, even though I told them I still had pain. After they got the diagnosis of endo, that was it... you go on hormone therapies (lupon/provera/birth control pills continuously & sometimes two to three pills at a time - all of which had horrible impacts on my body), then it was, well surgery, surgery, surgery... After a while, I started thinking there had to be something more, because this stuff would help sometimes and sometimes it wouldn't. It was hard enough to get the diagnoisis of endo, but then to try to convince doctors that there was more going on was torture.... At that point, I knew there was something else going on. I found Dr. <> and he said, lets just start testing for everything. We did an abdominal MRI, ultrasounds (pelvic and abdominal) hormone tests, blood tests, urine tests, etc. We realized that I get cysts often (trying to control that with diet and exercise), but they spring up when they want. I still had burning pain (like I had a bad uti). He went in and cleaned everything out, we regrouped and when there was still pain, he suggested the possibility of chronic pelvic pain associated with all the trauma of the previous surgeries/scar tissue/adhesions, etc. He was the first one to believe that I might have additional stuff going on. Finally, this year, he suggested we test for interestitial cystitis... Endo's evil twin that often goes undiagnosed because it has the same symptoms of endo... The sad part is, a lot of women who have endo, end up being positive for ic too. Turns out, POSTITIVE. I had a cystoscopy last Wednesday and it was like looking at Jupiter. Huge red/bleeding stipes across my bladder and a great big bleeding ulcer in my bladder. So, the burning pain is ic. The sharp stabbing pain is ovarian cysts, the cheese grater feeling is the endo, and the tenderness and general discomfort is the chronic pelvic pain. It is amazing how once you get that intuned with your body, you can tell exactly what organ is hurting. Again, you HAVE to demand care. Hospitals turning you away is UNACCEPTABLE. If your gyno is not willing to treat you, get a new one.
My gyno wants me to go see a Dr. <> about the chronic pelvic pain. I googled him and there was an interview he gave that said it all... "If a woman says she has pain, she isn't lying and she isn't crazy... She really is in pain and we as doctors have to find out why." What a concept. I go see him on June 2nd., so I will let you know what he says. I hope you are feeling better. Sorry for the rambling! I am very passionate about making sure doctors listen.

That is awesome advice for all of us! I wish all dr's thought that way!