Infection After Hysterectomy with Cysts Everywhere

[Mya Symons]

I haven't been on this forum for awhile because I have been sicker than usual. I was having extreme pain with periods that were coming often (only 10 days between). I recently had a hysterectomy (two weeks ago). Three days ago the pain was so bad that I was rolling around on the floor yelling. They did a cat scan and I have Pelvic Inflammatory Disease from some mystery infection and what looks like cysts all over in the area. The doctor left my ovaries in and there are now cysts all over them from top to bottom. My bladder has some cysts and it looks like my colon might have some also. However, it is hard to see my colon right now because one of my ovaries has already migrated over to that area and is putting pressure on it. They checked me into the hospital and the doctor says I will probably be here for 3 or 4 days while they give me a variety of intervenous antibiotics. I also have fluid in my fallopian tubes and they won't release me until it is gone. I have had cysts on my ovaries before, also my breasts and my thyroid. Is this a normal thing for us, to have cysts in so many areas? I am also wondering why the doctor who did the surgery would not have removed the ovaries if they were so bad. She said if she saw a problem, such as lots of cysts, she would. It seems strange. I have not been able to make an appointment with her because they refused to see me right away. They were going to make me wait two weeks. You know--that whole she has fibro and CFS thing, so she must be exagerrating. My husband called up and gave them a piece of his mind. Later, after they decided there really was something wrong with me, they called him and apologized. One positive is that the doctor at the hospital I am at now is doing many bacterial cultures to find out what this infection is. Maybe it will give me some answers as to what has been going on with me.

Have you all had problems with so many cysts in so many areas? If so, do they go away eventually?

 

[Stone]

Hi Mya,
It sure sounds like you've had one heck of a time. I'm so sorry you've been suffering so badly. Both of my sisters, my daughter and myself have ME/CFS. My eldest sister and my daughter have both had terrible troubles with their reproductive organs involving cysts and things along the same line as your problems. Interstingly, they are both much less affected by MCS than my other sister and myself and we haven't had any reproductive illnesses. I wonder if there is any correlation with having the kind of ME/CFS that doesn't involve chemical sensitivity to a great degree and having female problems.

Anyway, I looked in the New Jersey ME/CFS medical consensus manual (the one that's almost 70 pages in length). On page 45 there's a discussion on fibroids and ovarian cysts, PID and dysmenorrhea (menstrual difficulty/pain). It says, "A history of ovarian cysts, including polycystic ovaries, and uterine fibroids were found to be more common in patients with CFS. These conditions have also been found to predate the onset of CFS more often than is found in control women."
And then there is a reference to this research :

Harlow BL, Signorello LB, Hall JE, Dailey C, Komaroff AL.
Reproductive correlates of chronic fatigue syndrome. Am J Med
1998;105:94S-99S.

The manual goes on to say, "There is no reported evidence of any increase in ovarian cancer in CFS. Referral to a gynecologist may be indicated if either condition warrants surgical intervention. A history of pelvic inflammatory disease, and of sexually transmitted disease was reported in a retrospective survey to be more common in women prior to their CFS (also referenced to the above paper) No studies have investigated the presence of any specific infective agents. Pelvic inflammatory disease may have stemmed from endometriosis, rather than from a pelvic infection, or the symptoms and signs could have been elicited from the presence of fibroids or ovarian cysts in some CFS patients with pelvic pain. About 15% of normal women suffer from dysmenorrhea, but at least 30% of patients with CFS are said to suffer from it." This statement is referenced to:

Jessop C. Clinical Features & Possible Etiology of CFIDS. The CFIDS Chronicle; 1991. p. 71,

And it continues, "Severe dysmenorrhea may occur on it's own or it can be a symptom of a number of gynecological conditions, which are more common in patients with CFS than in the general population. These are endometriosis, fibroids, pelvic inflammatory disease and ovarian cysts. In all these conditions, menses may be heavy. If there is any abnormality found on examination, such as a pelvic mass, further gynecological investigation is indicated."

The manual goes on to discuss pain relief for these conditions. Under the heading of "Hysterectomy" it says, "Patients with CFS are significantly more likely than controls to have had a hysterectomy" Reference for this statement:

Reyes M, et al. Risk factors for CFS. J Chronic Fatigue Syndrome 1996;2:17-33.

And continues, "The reasons for the excess of this surgery in patients with CFS is not known, but may be associated with the increased numbers of patients with endometriosis, fibroids, or ovarian cysts. "

There is a good deal more in the manual about women's health and reproductive issues. It also discusses at length, urinary and bladder issues common in CFS as well as bowel and digestive issues, too. I can't copy and paste from it in the Adobe format, but if you PM me with your email address, I would be happy to email you the document. You might be able to Google for it as well. It's called, "A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome", and it's put out by The Academy of Medicine of New Jersey, The University of Medicine and Dentistry of New Jersey and The New Jersey Department of Health and Senior Services.

I hope you feel better soon, and I hope some of this might be helpful to you.

All my best,
Stone

 

[Mya Symons]

Hi Again. I am still in the hospital with a bad infection. They have not let me eat anything but liquids for three days. It turns out that whatever is going on with my intestines is worse than the post-surgery infection. I have had surgeons in here everyday talking to me. They think that part of my intestine might be dying or dead because of lack of blood flow or because of my immune system possible attacking it. Anyway, I am getting really worried. If you are relegious, please pray for me, if not, I'll take thoughts. Thank you.

 

[glenp]

ID specialist

God bless you Mya. Have you got an Infectious disease specialist. They saved me when I had a bad infection. Since that time I get prophyactic antibiotics BEFORE surgery. For a time surgeons were cutting the infection out, until I got the ID doctors. It seems most physicians dont lile referring patients?? If you get a top ID physician you can also get special authorization for specific antibiotics not available to the general population. I hope this helps

glen

 

[Min]

(((Mya)))

I am so sorry you are going through all this and hope your doctors can help you - are they going to remove part of your intestine?

You sound so very ill & must be in extreme pain as you have just had major surgery. I send you love and every good wish that the infection, cysts and bowel problem can be healed soon. Hope someone can please keep us informed how you are xxx



(I have/have had cysts on/in my parathryroid, breasts and ovaries - also fibroids)

 

[ukxmrv]

I've also had cysts on breast, ovaries etc. My sister as well.

So very sorry that you are in pain and in hospital.

You are in my thought and prayers!

 

[Mya Symons]

Thanks guys. I just heard from the surgeon. He has had three people look at the Cat Scan and they have me on imipenin/cilastin now after three days of other strong antibiobics. This is one of the best they have and my ovaries are looking o.k. It was by chance they found the colon problems because of the infection cat scan. I am feeling much better now knowing how lucky I am. I am going in tomorrow for colonoscopy. Things are looking better then they originally thought. I am happy it is such good news do far. Sorry if unintellegible, I am on good drugs

 

[August59]

Proof that prayer works!! We were praying for you and they were answered. Glad things are looking better

 

[*GG*]

Sending postive thoughts your way!

 

[kat0465]

just came across your post tonite mya, and Praying for you too sounds like things are turning around.

when people pray, things change. keep us posted and glad your better.

Kat

 

[ukxmrv]

Thanks for posting again. Have been worried about you. Don't worry, you make complete sense. Good luck with the colonoscopy

 

[Mya Symons]

Thankyou everybody for the well wishes. It helped and I really appreciate it. I am doing much better. I am off the harsh I.V. antibiotics and on oral meds now and am feeling good. I may even get to go home tomorrow or the next day. Yeah!

Forgot to add--It looks like the intestinal problems were part of the post op infection and all will be o.k. in that area also.