New to Forum--Chronic Pelvic Pain

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StephanieJoy
Regular Member


Date Joined May 2010
Total Posts : 40
   Posted 5/2/2010 4:59 PM (GMT -7)   
Hello from California!!!!

I've suffered for the past several years from chronic pelvic pain and it's been very difficult to say the least. I really can sympathize with anyone who has chronic pain. It is terrible to be in so much pain and have to work full time and take care of a family. I've had several botox injections to help with my pain including weekly sessions with a physical therapist. The pain comes and goes. There are certain things that trigger it. I'm on a lot of pain medication and have been for quite some time. The problem is your body gets used to the medication eventually so you have to find other ways to cope with the pain. If anyone has any suggestions or tips that work for them, please let me know!!!

Have a great week!

Stephanie

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 5/2/2010 5:09 PM (GMT -7)   
Hi Stephanie. Welcome. I'm sorry that you're in so much pain. I have problems with my back. I use a heating pad and soft ice, rest, use a soft chair, etc.

Flower

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/2/2010 5:56 PM (GMT -7)   
Hi Stephanie:

I just wanted to say hello and welcome you to Healingwell. I'm always sorry to hear of another person suffering with chronic pain, but you will find that we all understand what you are going through in ways that no one else can.

I am sorry that I can't give you any advice on your particular source of pain, but I know that there are others here that can, and I am sure that they will respond to your post when they can.

Hang in there,

Lorie

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/2/2010 6:05 PM (GMT -7)   
Hello StephanieJoy! Welcome to our part of the world!

The first thing I would like to do is ask you to provide us with some more information about your self, as It sure helps us to determine how to answer your questions better.
What kind of pain meds, and how much? Are you seeing a PM or PCD? What is your diagnoses from the Dr's?

Many of us, if not all, suffer from CP here, so we have a pretty good idea what you may be going through. You have certainly come to the right forum for support, that is for sure.
Make sure you keep checking your post for replies, as it takes some time for all of our members to see your question, especially on a weekend.

You are correct in that a person may indeed build up a tolerance to a certain med if taken over a long period of time, but there are many many medications to try
before giving up. And actually, I have a good friend who takes a liquid form of the same med that I take, and at times that can work better than pill form.
So, I'm curious as to which med you are taking and how much. We have seen new members come here who are way under medicated, and they believe they are on a lot of pain meds.

We are so sorry to know that you are in that much pain, but you are not alone by any means at all. One thing we ask any new member to do. is to read the Chronic Pain 101,
at the top of our forum page. It has some very helpful information to say the least. It was posted by our Moderator (Chutz).

Also, we ask that you please read the forum rules when you get a chance, as it seems to have a way of reducing problems later :)
One point I would like to make to a new member is....If you want to become a active member on this forum, it will take a little bit of action on your part. I see new members ask a question,
and then see it drop off the first page before anyone has had a good chance to see it in the first place.

If your question has done this, please feel free to bump it back to the top of the page, as we really do want you to find a quality answer to your question.
Also if you can help on our forum, we welcome that as well. In other words, if you see a question from another member that you have knowledge about,
by all means, feel free to answer it.

Again, we welcome you to our forum! :)

SE :)
DDD (Degenerative Disk Disease) Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion L4-L5,L5 S1 March 5th 2010, Four cortisone injections Tendinitis in Elbow.

Post Edited (Screaming Eagle) : 5/2/2010 7:32:10 PM (GMT-6)


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 5/2/2010 6:27 PM (GMT -7)   
Hi StephanieJoy and welcome to the forums. I too suffer from chronic pelvic pain in addition to Fibromyalgia and several other issues (all in my signature). I've been dealing with the pelvic pain in particular for about 3 years now and we seem to be making some headway into "what" is causing my pain. Part of it has to do with scar tissue and adhesions from previous surgeries, part of it from permanent muscle damage in the pelvic floor, I have knots and numerous trigger points in the psoas muscle (I've had Botox injected twice and local anesthetics 3 times), with no relief.

Up until last year in June, I worked fulltime, did crafts, volunteered for a ton of things and kept pushing the pain issues out of my mind. I held an extremely fast paced and detailed job, and I couldn't take pain meds and still function. The pain finally got so bad without drugs that I had to go on disability at work, just to get the pain relief I need to manage my day. I'm now on 2 narcotics plus several other medications and average 3 naps a day because I'm so tired all the time. I think things are getting better in that we've found some medication combos that are helping me now but the pain is always there...often manageable, sometimes agonizing to the point that you can't even speak words to describe it...

I hope your doctors have some ideas on what is causing your pain, and what other options they might try to help you. In the meantime, heat is your friend as you might know and gentle stretching won't break anything, even if it feels like you're tearing apart. Try to get some relax time each day and if you can, download or buy some "meditation" or "spa" music. It really helps me when pain is high...I sit in a comfy chair with a heat bag over the pelvic area, listen to a CD and just breathe.

I hope we're able to offer you ideas and support.

hugs,
Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries:[ Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications:Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine and Cesamet, plus Laxaday, Vitamin D and a Multi-Vitamin daily


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/2/2010 8:09 PM (GMT -7)   
Stephanie...

Welcome... sorry you have chronic pain... but glad you made your way here. Everyone here is very encouraging and supportive... and understands what it's like to deal w/ all the issues that come with living w/ pain.

I think some of the others gave some good advice to you... I'd be curious to hear what meds you are on, too...and what else you've tried. I have a HUGE tolerance to pain medications... and I finally found a combo of things that worked for me. It doesn't take away all the pain...but it does help a great deal w/ it... It took a long time, though, to find that right combo. I understand completely about the tolerance that comes w/ taking medications long term... sometimes, though, it just takes making a change in a medication... for instance, I rotate my "breakthrough" meds about every 6 months. This seems to help w/ the tolerance issue a bit.

Anyway... I encourage you to keep posting and sharing more so that we can get to know you... :) And, again, welcome :) (Oh, and I'm in California, too) :)
--Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/2/2010 9:14 PM (GMT -7)   
Hi Stephanie!

And welcome to the CP family. It really is a family of friend who truly understand what you are going through. Rationally, it's unlikely that men know what your pain is like but we all know what chronic pain is like to live with.

This is a great bunch of folks who walk your path daily and have had lots of experience with it. Plus we all are here to share, to hold you up when things get rough and to celebrate any successes you have in life. I did look up and read a bit on chronic pelvic pain. It must be frustrating since there are so many things that can cause it. Do the doctors know what the cause of your pain is?

I have fibromyalgia which is 24/7 pain and I understand how medications can stop working after time. That's why it's so necessary to work closely with a doctor you can get along with. Also, does warmth help relieve any of your pain? You might try warm bathes with some nice bubbles or fragrance that you enjoy....anything to help relax. When pain ramps up we tend to tense up and it only makes the pain worse.

Stick around and we'll do all we can to make your life easier including being here for you.
Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/2/2010 9:15 PM (GMT -7)   
Hi Stephanie
 
Welcome to the chronic pain forum.  I'm glad you found us but sorry that you have the pain.  It helps when you know that you're not alone with the chronic pain.  I am also wondering what meds you're on and what dosage. 
 
I can't give any suggestions for coping because I'm not coping very well myself.  I do use my heating pad and lidoderm cream(prescription) to try and help the pain.
 
There are really supportive and caring folks here. 
 
hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 5/3/2010 3:39 AM (GMT -7)   
Hi and welcome.
Retired Mom


StephanieJoy
Regular Member


Date Joined May 2010
Total Posts : 40
   Posted 5/3/2010 1:27 PM (GMT -7)   
Thank you SO much for all of the wonderful emails I received.  What a great website!!!  I am SO glad I found it!!!
 
Here is a little more about me....
 
Many of you asked what pain medications I am on.  I am currently taking percocet and have also been on liquid morphine and norco.  The norco didn't help me at all.  I didn't feel like it gave me any relief for the pain.  I've been off and on percocet for a couple of years now and am starting to think it's not quite as effective as it used to be.  I think I need to talk to my doctor about trying a different pain medication.
 
My condition has been a complete nightmare....  For starters, it took a LONG time before I was actually diagnosed.  It started about four years ago (I was 28 yrs old).  I started having a lot of pain and trouble going to the bathroom and my MD thought it was a bladder infection.  They gave me 2 antibiotics that did absolutley nothing.  Then they thought I had IBS (Irritable Bowel Syndrome).  Then they thought I had endometriosis.  The pain just continued to get worse and worse.  I saw several specialists--a urologist and a gastroenterologist.  They ran several tests and I even had a laproscopy done but they couldn't find anything.  The urologist was the one that figured it out.  Why my OBGYN didn't get it was beyond me.  Anyways, there are not many specialists who deal with pelvic pain so after waiting almost a year (YES, A YEAR) devil to see the specialist, I finally started to get treatment.  By this time, I was also having severe severe periods.  Very heavy bleeding and very severe pain (up to a full week BEFORE my period).  I had been on the same birth control pill for several years and then all of a sudden things changed.  For months I was taking 8 percocets a day a full week BEFORE my period and then liquid morphine during the week of my period.  I had to make several trips to the ER because the pain was unbearable.  I just couldn't stand it.  It was an absolute nightmare.  I wanted a hysterectomy but of course because of my age all of the doctors FREAKED out and wanted to try other options.  devil    They put me on depo-lupron for 6 months which starts menopause!!!  How fun that was!!!  They thought this would help make my periods better.  It didn't work.  It has severe side effects including severe bone density loss.  They practically forced me to take it.  I was so angry.  I'm a slim person and a prime candidate for osteoperosis which was why I didn't want to take it in the first place!
 
Anyways, I have been seeing a pelvic pain specialist for a couple of years now.  My therapy includes botox injections (I just had my 5th one), physical therapy, nerve blockers and nerve medication.  I am currently taking Lyrica which I believe is also given to people who have fibromyalgia.  My pain flares up after I go to the bathroom and after I have intercourse.  It can also just come out of nowhere. 
 
I really do sympathize with everyone who has chronic pain.  It's hard to even think about having to deal with this the rest of my life.  On top of all of this, I am suffering from depression.  It's been pretty bad at times.  cry
 
What a blessing finding this website is....
 
Stephanie
 

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 5/3/2010 3:58 PM (GMT -7)   
Stephanie, what did the doctors say is the actual cause of your pelvic pain then, after all the testing? What exactly did the urologist say....is it Interstitial Cystitis?

Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


StephanieJoy
Regular Member


Date Joined May 2010
Total Posts : 40
   Posted 5/3/2010 4:02 PM (GMT -7)   
No, it is not Interstitial Cystitis. They don't really know the actual cause. I've heard several things such as IBS and endo but they don't really know...

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2010 8:50 AM (GMT -7)   
Hi Stephanie...

Re: your medications, I would talk to your doctor about maybe trying a low dose of a long-lasting pain medications (there's morphine, oxycontin, among others). Morphine comes in two forms - long lasting (you get a continual dosing over a certain period of time...anywhere from 8 to 24 hours) and short-acting (the dose goes into you immediately, and exits, within a few hours).

The good thing about long lasting meds is that you don't get the "peaks/valleys" of pain... you get a pretty consistent pain relief.

Anyway, I don't know w/ the specific kind of pain you have, if that would be helpful... but you might mention it to your doctor.

Many of us here have depression, too... so we understand all about that subject, too :)

Anyway, I'm glad you found your way here :) I'm in Northern CA, too, in the SF Bay Area...

Take care, Stephanie :) --Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


Reddoor66
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/18/2015 3:12 PM (GMT -7)   
Hi all new to this but after suffering with chronic pelvic pain for the past two years I feel the need to talk to someone who can relate to the isolation that occurs due to the inability to participate in an active life. I am reaching my breaking point with not being able to do the things I used to and the long waits to get any help in relieving or remedying this problem. What the doctors seem to have narrowed it down to is Pelvic Floor Muscle Dysfunction, IBS and degenerative disc disease. As the pelvic floor muscles have reached full Charlie horse stage it is putting strain on lower back and bowels not working properly. I take buscopan, tramadol, have spinal pain blocks every 3 months in my lower lumbar and sciatic joints. So far they have dulled the pain but if I attempt to be active the pain just increases until I can no longer walk, sit or stand. As time has gone on no matter what pain relieving attempts I make - massage, heat, cold, yoga,,, I try and do it all nothing seems to help any more. I feel so tired all the time just trying to deal with the pain. If anyone has insight as to pain relief that I may not have tried I am willing to hear about it and try it all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/18/2015 3:24 PM (GMT -7)   
Hello Reddoor66 & welcome to the chronic pain forum. You have posted on a thread that is over 5 years old & the original poster is no longer active here at Healing Well. We have not heard from her since she posted above.

We do ask all new members to make a separate intro post so that all members will see it & be able to say hello & welcome aboard. By posting on this older thread not many people will see your post & be able to respond. If you can copy & paste what you have written above it would make a wonderful intro post.

I will lock this thread so no one will respond here as we like to keep the older threads off of the man page. Thanks.
Susie
Moderator Chronic Pain & Psoriasis Forums
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