posted
I've always had a lot of problems with endo but never this intense. Currently, I'm getting horrible pelvic pain that radiates into my back (never had this before).
When I get any twinge of pain I take herbs my acupuncturist has given me for endometriosis and the pain ususally disaapears with a day or two at the most.
Tuesday I woke up with horrible pain and I'm having problems gertting rid of it. This morning was so bad I camped out on the couch all morning.
Does this sound like a cyst, endometriosis or something else? My stomach has also been bothering me and wonder if I have endo in the bowel.
What have others done when pain gets this intesne? I haven't called my gynecologist yet. I just switched insurance plans due to cobra running out and have another $1,500.00 deductible to meet..ouch.
Posts: 911 | Registered: Mar 2005
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posted
I'm sorry I forgot to say, that most cystis would show on a ultrasound, my endo only showed when he went in yesterday.
Prior to this I had vagal ultrasounds - paps - reg ultrasounds etc, everything was neg.
Would your insurance pay for an ER visit, there they can do an ultrasound and look for a cyst?
Posts: 374 | From NJ | Registered: Aug 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
i have been dealing with very serious endo for years side by side with lyme. I have now had 8 surgeries that all stemmed from endo even though many of them were NOT actually taking the disease out but were fixing problems related to the disease. my most recent bout of surgeries was to try to fix my right ureter that got burned when the ovarian barbarian took out my ovary without giving enough respect to the fact that it was freakin STUUUUUCK with a wall of adhesions and my ureter was sandwiched in between that and my pelvic side wall. I have been hospitalized 3 times and have had 4 surgeries in 4 months so far without resolution of this situation. So I know pelvic pain and I know how serious and far reaching endo can be!
ANYHOOOOO---my suggestion would be several things... join the ERC Endo research center website...look it up on google--sorry dont have the direct link. Good feedback can be gotten there.
Also go to www.pelvicpain.com I have had my endo excised by doc cook (famous guy) but it still returned within a YEAR!
sounds like you know alot about endo and cysts already. You prolly should bite the bullet and go and get evaluated. NOT at the ER. That would be more expensive and often they do not perform ultrasounds and def not intravaginal ones. they just figure out if you are about to die within the hour and if you arent they say follow up with your GYN.
You cant see endo on a scan as ladylee said, but you can see cysts, and you can see free floating fluid if the cyst has ruptured recently.
There are many important organs that endo and adhesions can mess up so it is important to get evaluated as soon as you can with a good GYN that has good equipment and track record and will spend the time neccessary to help you!
I know it is expensive, but what is life sitting on the couch? Answer--a couch potato!
Wishing you pain free times soon! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I had endo wrapped around the bowel not fun. I had lower back pain with it. I finally had a hysterectomy 8 years ago. I still have one ovary the other got messed up by the endo.
The hysterectomy gave me back my quality of life. Until I got lyme.
Hang in there, and get pain meds.
Posts: 175 | From Pa | Registered: Aug 2006
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posted
Thank you everyone. In 97 I had a hysterectomy and still have the left ovary..the culprit. It's likely it has returned and surgery may be my only option. I've never had full relief with the hysterectomy untiL I did herbs and acupuncture.
For some reason it's returned and as well know it's the nature of the disease. I'll follow up with my GYN next week and see what he has to say. Wednesday I see my acupuncturist and maybe she can do something to help the pain. My lyme was doing well and in the last 30 days I've had some what of a relapse.
Posts: 911 | Registered: Mar 2005
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I've had 4 laparoscopies and I remember the gas was quite painful after surgery. Walking and moving as much as you possibly can will help get rid of the gas.
Posts: 911 | Registered: Mar 2005
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posted
I have had intense pelvic pain that radiated into my back. This happened many times during my life. Amazingly since starting Lyme treatment I had one horrible episode and then no pain for the last 18 months.
The reasons for my pain were:
Pelvic Inflammatory Disease (PID) Severe pain & fever.
Kidney Stone: Sudden & Severe, Nausea, vomiting and collapsing on the way to the emergency room.
Ovarian Cyst: Seemed light the kidney stone at first. Radiated into my back, Swollen belly (I looked pregnant) worse when I moved, Felt like knoves were stabbing me when I walked. These cysts recurred annually. I would need to go through a full menstrual cycle for it to resolve. I spent a month motionless on the sofa taking codeine (Tylenol 3)
Mystery Episode: Approximately 5 months into my lyme treatment I got excruciating pelvic pain. I managed to get home and lay down on the sofa. The pain got so bad I thought about going to the emaergency room. It hurt so much I knew I could not get to the door to let EMT in so I didn;t call. I remembered reading several LymeNet posts about similar episodes and recalled people saying nothing was found at the emergency room.
Mystery Episode Continued: The pain subsided within an hour. I felt weak for the next day. After that I never had pelvic pain again. My next periods were not painful (They had always been excruciating). After a few months I stopped getting my period. My LLMD says it will return.
For many years I had pelvic pain that would come and go. My Gynecologist put me on birth control pills. That helped control the pain but gave me a bunch of new problems like high blood pressure. I went off Birth control pills just before I got Lyme.
One thing that always triggered ovarian pain for me was eating soy. I can have a little soy sauce but avoid all other soy products. Various alternative doctors told me soy can have this effect.
None of this is medical advice, just my experience. If you do get a fever I think you should definitely get to a Doctor. Hoping you feel better soon.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
ladylee---yes unfortunately walking and moving at THIS point are the ways to get rid of the gas--but it is very painful. I am so sorry! One way in the future that I found helpful was to lie completely flat for 3-5 hours post op---when i requested this in out-patient places they gave me a hard time, but i was very adament and they allowed it. I also told the docs I had specifically very hard time with this and to make sure they get out as much gas as possible!
Also---HEATING PAD!!! heating pad helped with the pain. very much. good luck! Did you have your endo excised? or ablated? what other forum are you talking about that you read my story? Good luck in your healing. take it easy---lap surgery is a longer road full of bumps than most docs let on. rest plenty!
Tickalert---sounds like we have some horror in common. I am sorry for your misery. my lyme and my endo are VERY much tied up together. Doc Cook has a little ditty on his website about lyme and endo. I know the lyme is running the hormone show which in turn is messing everything up.
I have one ovary and my uterus left but both are riddled with endo again and fibroids and just not at all well. I am considering full hysto. I am 34. how old are you?
One thing I have learned from my summer experience of burned ureter is DO NOT go with a surgeon who you do not TOTALLY trust. I mean if you have any bad feelings--dont go with them. With endo you prolly have adhesions and getting that last ovary out can be very difficult. You need to find a surgeon who is willing to take the time to do a good job and not hurt you in the meantime. I am not saying this to scare you--although I prolly am --sorry. I am saying this because i only NOW know that having endo and adhesions raises the risks considerably for surgical injuries during ovary removal. you have to have a surgeon who will spend a LONG time and be meticulous in their surgical technique.
I am glad you decided to go see your GYN and try to figure out what is going on. I wish you no pain and answers to your Q's asap! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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I had the endo burned out so the nurse says, all of my organs were ok.
I have had lyme since 1985 - back in my very very sick days with lyme I often had severe pelvic pain, many times I had ultrasouds done, nothing showed.
My Lyme Doc said it was Lyme related.
Thank you for the tip on using the heating pad - that I do.
My girlfriend who is a surg tech did come over yesterday and said I looked fine and felt fine (hard as a rock). I'm also do for my period so it's like a double whammy right now.
I read your story on this forum plus the general support forum.
Again Best wishes.
Posts: 374 | From NJ | Registered: Aug 2006
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I'm 43 and sometimes consider taking the ovary out. I know who Dr. Cook is and he's supposed to be one of the best. My lyme is also very much tied into endo. A year after I got lyme, I had a miscarriage and right after that doc did the d & c, I had pelvic pain and was diagnosed with endo.
Do you have children or plan on having any? If not, it might be an easier decision for you to have the hysterectomy. A few years back I had a phone consult with Dr. Cook and highly considered seeing him. It sounded like he took extreme cautions to minimize adhesions.
I do hope you get your situation resolved. It sounds like you've been through so much with endo, lyme and a bad surgeon who removed the ovary.
Posts: 911 | Registered: Mar 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
thank you so much for thinking of ME tickalert when it is you right now who has so much unanswered not to mention that this is YOUR thread.
I dont have children and really want/wanted them. All my friends are preg or have little ones. I am a lesbian and believe it or not this makes it HARDER because there is A HUGE lesbian baby boom going on right now. It is changing the face of our culture. And it is hard for me.
I have been grieving not having children for a very long time now. But since i still have a uterus and an ovary there has always been a sort of chance. Even though I know it my heart of hearts there is NO chance. There are many other issues besides endo--money, my partner is 14 years older than i, genetic problems that could be passed on (spina bifida), lyme that could be passed on and the list goes on and on.
i would LOVE LOVE LOVE to adopt, but I am really too sick to take care of any children but my inner ones right now.
So the not having children is playing a large role in my decision but not as large as the medical role of will i get ANY relief and how will my body handle this???
If i knew that I could get a handle on the endo and then maybe the lyme as a result of getting this hysto---then I could possibly be ABLE to adopt, so ironically by having a hysto i would open the door to children in my life.
I am so sorry to hear about your miscarriage. that can be devastating for some. I hope you were able to come to some peace and understanding. my heart goes out to you.
please keep us updated about what the GYN says and how things are going for you. Lyme with endo is a real nightmare---I am so sorry you have to suffer too. best, trails
PS--glad you got to talk with doc cook-- he is one of the best--i have some bones to pick with him, but all in all he is an excellent surgeon and practically took ALLLLL my adhesions away!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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