cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi,
This is just an update for everyone who was so caring when I was in agonizing pain a while ago... 'specially all the abdominal pain buddies!
Finally got to see the results of my CT Scans - looks like I probably had an ovarian cyst rupture, and probably the old endo has reared its ugly head again, since I had another episode (not quite so dramatic as the first) about a month later.
Ugh. I have a long, sordid history with endo, so... I'm disappointed but not surprised. It's back to hormones and pain killers as needed for me. I had hoped Lyme treatment would help resolve some of the pelvic pain issues, but no such luck.
I'm hoping that everyone else who was having abdominal/pelvic pain has found the answers they needed... I haven't been online much to see, but everyone's been getting lots of healthy vibes from me!
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
Mine have been bad lately too! Been dealing with them for most my life, but lately have been worse.
They think an ovarian cyst may have ruptured a few weeks ago.
They felt some lumps, so I am having an ultra sound today.
I am so tired of tests, doctors, etc...
I hope you all feel better soon!
Posts: 240 | From MA | Registered: Nov 2006
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Jif, I hope your situation's improved, and you've got some better answers. Your mail box is full, by the way...
Lioness, good luck with the ultrasound today - I hope you get the results you need to figure it all out. Not knowing is worse, sometimes, isn't it? Looks like I had one rupture a few weeks ago, too, plus I've got known endo issues in some sticky spots.
On the bright side, I'm not worried about taking my meds anymore!
Hope you guys are doing well, lymie-wise...
Any other news from the unofficial abdominal pain club?
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
My first and most distressing lyme symptom was severe constipation.
I am not sure constipation is the correct word, stool soft, but wouldn't come out. (Paralytic illus?) My colonoscopy was normal, and my initial dx was IBS.
I also had moderate pelvic pain/ back pain and pressure.
They say that there is nothing blocking..... but it still does not work. (Maybe 50% better, but a daily battle for the last 1 1/2 years) And that is with lots of glycolax.
Where is you old thread? I would like to read it. Also I would like to hear any input.
Posts: 258 | From Washington State | Registered: Nov 2005
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Von - ouch, the IBS diagnosis is such a non-answer... Are your symptoms improving w/ Lyme treatment at all?
They gave me the IBS diagnosis also, maybe 10 years ago, among others... But those symptoms seem to come and go for me - I can't imagine a daily fight with it. Must be hard to manage.
There were a few threads about pelvic/abdominal pain going awhile ago - I don't know how to put in a link for you (I should, I know, and I'm embarassed) but you can search for it probably - mine was titled, "Intense pelvic/abdominal pain!! Help!" Dramatic, but I was pretty scared at the time.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Cactus, Sorry about the ruptured cyst and the endo. What will you have to do now? Will/has the cyst reabsorb?
I hope the hormones and pain meds are helping. Will they help enough? I'm so sorry you're having to deal with it all.
I really hope you're feeling better soon.
As for me... After all these months and going around and around with doc's not doing anything but poking and testing and hurting me more.
I did finally get a definative answer about the gallbladder.
The LLMD took one look at the tests, examined me and said that HAS to go yesterday.
Why the internist and gastro couldn't be bothered to interpret the tests and bloodwork escapes me.
I'm tentatively scheduled to have it taken out on wednesday, providing I can get the pre-op tests and stuff done by then.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
tailz
Unregistered
posted
Whatever you do, Cactus, do NOT get a hysterectomy for your pelvic pain, endometriosis, or ovarian cysts! I did and I regret it.
I have a suggestion though. I am not improving on just Rocephin for Lyme either (only somewhat - and in some ways I'm worse), and all my coinfections have been negative thus far. I knew something else was going on though and PUSHED for (more like demanded) blood cultures. They grew several types of STAPH, and I'm still waiting to see what kinds of staph and what they're sensitive to. I think I have it in my sinuses, too.
I 'think' the staph was sexually transmitted (at least one of them). I was seeing a guy who had some sort of staph infection in his knee before he met me. He said they treated it, but I don't know. That's when my pelvic pain and endo started.
Don't wait for the endo and infection to kill your ovaries - make them culture your blood for staph and strep and things like this. And this is IMPORTANT: take LOTS of Vitamin C before you let them culture you. I had several sets of blood cultures taken from me - all negative until I stimulated my immune system with the Vitamin C several days in advance. LOTS of it, too!
I'm hoping the underlying staph is what is preventing my recovery, and that once we start vanco or whatever I need, then maybe I'll see some more progress. Just don't let them castrate you like they did me. Good luck, and hang in there!
P.S. I was on Premarin when my ovary was freaking out, and that INCREASED my pain. Remember - hormones like estrogen are STEROIDS, too! You probably want to avoid those as they will feed any infection you have and increase pain in the long run.
IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
True - it's hard to believe you just got your answer, too. Took a long time for us both.
I'm so sorry to hear you'll be having surgery, but hopefully this will help resolve the issue. I hope you haven't been in excruciating pain this whole time?
I had my GB out the end of June - it wasn't too bad, but then again, it wasn't as easy as I hoped either - just somewhere in between. Had a long period of increased fatigue post-surgery, but once the fatigue ended, I noticed a definite shift in my Lyme symptoms, so it was one more positive about the surgery.
Endo-wise, the cyst situation seems resolved, and the pain seems fairly cyclical. Hard to tell without all my parts (had a partial hyst in '00, so I have ovaries sans uterus - makes it difficult to tell what my ovaries are up to!). I have issues with endo on my bladder and ureter, so I suspect those spots are flaring up again.
At this point, I have a little theory that my ovaries haven't been functioning for quite a while - thus my respite from pelvic pain. Apparently now they're working again - ouch! So we'll see if the hormones will help. Simply knowing that it's endo & not something else will help, mentally.
Tailz, you have endo too? Yuck. What a bummer, but I would love to hear more of your experience with it. I have had a hyst, but opted to keep my ovaries and take my chances - I was only 28, and wasn't ready to give 'em up. I knew I also had adenomyosis, though, so that was a factor in my choice, as well (also a long history of pain, and having tried all the options available to me at that point!).
Thank you for the suggestion about staph - I will talk to my LLMD about it. I agree with you that infections create/contribute to the endo problem, and it's entirely possible. We know I was infected with Lyme prior to developing endo, and I have other persistent, chronic infections (salmonella, legionella, babs, and on and on). What a great idea about the Vit C, too - thanks!
Hope everyone's having a good one today, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by tailz: I knew something else was going on though and PUSHED for (more like demanded) blood cultures. They grew several types of STAPH, and I'm still waiting to see what kinds of staph and what they're sensitive to. I think I have it in my sinuses, too.
I 'think' the staph was sexually transmitted (at least one of them). I was seeing a guy who had some sort of staph infection in his knee before he met me. He said they treated it, but I don't know. That's when my pelvic pain and endo started.
I've been thinking I need to be tested for Staph. All the Docs poo-poo me.
I was diagnosed with a bacterial vaginal infection prior to being diagnosed with Lyme. It turned out to be Staph Aureus, I herx on 6 or 7 ABX. I didn't understand what was going on at the time; I thought I was allergic to all ABX.
I was diagnosed with Lyme about a year later. herxing was explained, etc... When I went back to the GYN she said Rocephin was likely the most effective ABX for Pelvic stuff.
I don't know if she was right. I had increasing problems for the next 12 years and a D and C last year that finally stopped the bizarre periods but not the intermittent ovary pain thing.
Cactus, I can believe how long it takes to get anything done either. I understand about the ovary thing, mine are still doing something without having periods. But not knowing what the cycle is makes it impossible to predict. Usually the pains that are lower right are like the mid cycle pain I used to get, occasionally more like a cyst.
What freaked me out last time I had an internal US was it hurt me really bad for a few days. (but on the back left) Um... that's not supposed to be that way. I've had them before.
Also thanks for telling me about your GB experience. I feel somewhat better having an idea what to expect, having never had a surgery before.
I'll ask the GYN to test for Staph since no one else will. Now I know to take vitamin C first.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[Eek!]](eek.gif)
![[shake]](graemlins/shake.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic