Chronic Pelvic Pain
86I AM A CHRONIC PELVIC PAIN PATIENT
When I first started this hub, I was irked by a website that I had found and just wanted to write about women protecting themselves from people who would take advantage of their pain. Over the last few days, as I have added more information, I realized that I needed to rethink the opening capsule and explain why this is a subject so dear to my heart.
In March 2002, I woke up with a sharp pain in my left side. After an appointment with my ob/gyn, I came away with a couple of prescriptions and a diagnosis of cysts on my ovary. Armed with the knowledge that the pain would go away after several days, I was not alarmed.
Over the next twenty months, my doctors' offices became a second home to me. Back and forth between my internal medicine doctor and my ob/gyn doctor, I alternated between frustration and disbelief that pain on my left side kept returning. Cysts, chronic cysts, irritable bowel syndrome, anxiety disorder -- the diagnoses were starting to mount.
And then, as suddenly as it seemed to appear, the pain went away. It was the calm before the storm. Several months of pain free living -- I was out partying like I had miraculously returned to my twenties.
In December 2005, I woke up to pain and my life changed forever. Although I didn't know at the time, I had lived my last day of being pain free. The cysts had returned along with other symptoms and I began my hunt to find a physician who could fix me. My days got darker as I searched in desperation for relief and I learned what it was like not to be believed.
My ob/gyn and I decided that a hysterectomy was our last resort as the pain continued and anemia appeared. I was past my child bearing years and I was ready for the cure. I just knew getting rid of the offending organ was the answer and agreed to schedule surgery in April, six weeks away and the beginning of Spring. The first 24 hours after surgery are still a blur. The doctor appeared at my bedside on the second morning with the news that the laboratory had found Adenomyosis. Cells of the lining of my uterus had lodged in the uterine muscle, causing pain and abnormal bleeding. Ha! I knew I wasn't attention-seeking or drug-seeking or whatever seeking it was that they convinced themselves of and tried to convince me. Released a couple of days later, I was looking forward to recovery at home and then getting with my life.
Six weeks later, I was in my doctor's office for a surgery check ---it sure felt like the old pain was back. Convinced that recovery wasn't going to go off without a hitch, I had assigned the pain to the hysterectomy. My doctor did a quick exam and held my hand as he told me that everything was going well and he could not explain the return of the pain.
I found my current doctor two weeks later. She saved my life and brought me back from the dark. I remember her first words after the exam,"I know what's wrong with you."
My doctor and I have battled together for four years now. She has allowed me to be my own patient advocate and has never made me feel like I was anything other than a patient with chronic pelvic pain. We have tried every treatment from physical therapy to botox to acupuncture. She has shared the latest research with me as I showed her the latest thoughts from other women with the same pain. She has helped me to understand muscle spasms, trigger points, the physical destruction caused by anxiety and how chronic pain can change the brain. I have been her guinea pig with complete trust and cooperation.
I still have pain everyday. I go faithfully to all my doctor appointments, endure trigger point therapy and fill prescriptions. I have not given up on my hope for a cure and she has never hesitated to continue treating me. Although hope fades for a permanent cure and a restoration of a former life, I am grateful to have a little of my sense of humor returning.
If you are struggling with chronic pelvic pain, you are not alone and this hub is for you.
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Thank you for posting this. I too have been living this nightmare for years. After nine surgeries, multiple doctors telling you that you are after drugs or it is all in your head, I was ready to give up. I actually had the surgeon who performed my hysterectomy tell me pre-op, "I have women with cancer who don't have this much pain, and they are truly ill, not just looking for attention." He ate his words the day he told me there was adenomyosis found along with the many adhesions we were aware of.
Just like others, every day is a challenge. Every moment is filled with pain. I have yet to find a doctor who is willing to prescribe adequate pain relief. Fortunately, I have a loving fiance and two wonderful sons who help every step of the way, always believed me, and never make me feel bad for being limited.
Through all the surgeries, infections, medications, and days lost to pain, I thought I was alone. Thank you for posting this and showing me that there are others who have not given up hope.
Thankyou!!!for writing this hub.I have Endometriosis,I have had laporascopic surgery as well as a complete hysterectomy.There is no cure.Cronic pelvic pain is something I have had to live with since 19 years old.It helps hearing from other sufferers out there who know its not just the physical pain we deal with it is the emotional pain as well.There is a definate lack of compassion and understanding from the men in our lives as well.I wish things were different.Perhaps in time they will be.One thing I know for sure,There needs to be more research and funding and more voices coming forward.
I have been suffering with pain for almost a year now. Muscle spasms in groin, down my thighs and in my vaginal area. Constant pressure as if a baby is crowning. I have been from gyn to urogyn to physical therapist and back to gyn. Diagnosis included: prolapse, interstitial cystitis, possible bladder cancer, etc. Finally my most recent gyn went ahead with a hysterectomy. I was diagnosed finally with adenomyosis! I also had adhesions present. It has now been two weeks since my surgery and the pain is back with a vengeance. Are these symptoms familiar to anyone on this site. Neither my gyn or the urogyn can explain the return. Help!
Wow...I cant believe I found this site. Your story and feeling's about your cpp sound so much like my own. If there is one thing I have noticed from speaking to other women with cpp is how similar our stories are. I have been suffering from this debilitating condition for 8 years. It all began when I was delivering my daughter and almost died. It was the scariest thing I have ever been through. I have had 13 surgery's and feel like I have literally gone to hell and haven't come back yet. I have been through the thinking I was crazy. I have realized that that is not the case. This is a credible condition that some women live every single day we wake up. Being in pain is our normal...its always there and almost nothing helps relieve the pain. I have had 6 of my surgery's in 5 months and was in full blown menopause at the age of 26 I am going on 34. My pain is worse now then when it started. Thank God I found my doctor that I have now. She is just absolutely the best that there is out there for women like me with cpp. I run a support group
Sorry I hit the wrong button. I run a cpp support group for women who have this condition. Some people aint as fortunate as myself to have an amazing husband who has been by my side for this whole crazy and wild ride. I just wanted to form a group of women who dont know each other that well but we are all linked on such a personal level. We exchange resources and maybe a new way of coping with the pain. We are all e-mail buddies and we are genuinely friends...friends who totally get each other because if you don't have or never have experienced it then it cant really be explained. If there is one thing that totally makes me wanna go out of my mind is when people say to me...I understand. No you don't and you never will unless you are as unfortunate as us who do suffer alot from cpp. It just rips your life apart. It affects every single aspect of your life... I have to take pain medicine every single day just to be able to move. It has made question everything and getting in your own head could get dangerous. Pain medicine isn't really recommended for long term use. So what do we do? We keep fighting the good fight.
I can't believe how similar all of your stories sound like my own. I had 2 c sections before I was 30, following 2 very difficult pregnancies. Before my second was a year old I was having right lower quadrant pain. It hurt when I stood up, sat, exercised etc. I went back to my ob/gyn and he said that I probably had adhesions. I signed the consent form for a laporscopic surgery to have the adhesions removed. Who knew that doing that 4 years ago would change my life forever. During surgery the dr nicked an artery. I remember waking up afterward and him telling me what had happened, but I was assured that he fixed it!! My "simple day surgery" turned out not so simple. I was having a hard time maintaining a blood pressure, pain was out of control. But not the pain I had on the right side. My new pain was now on the left. I got poor care while in hospital so I figured, I am a RN I can look after myself better at home. So I left. Over the next few days the pain was 110/10. I couldn't eat, I couldnt keep anything down. I went back to the surgeon he thought that maybe I had a UTI put me on some antibiotics. 2 days later I was still laying in bed. Even to put my left foot on the floor sent excruciating pain throughout my body. It wasn't till I was having a hard time breathing then I went to the ER. They say nurses make the worst patients. I am sure the wait was hours, but I was rushed right in. They found through ultrasound and a ct scan that I had a football sized hematoma in my abdomen and pelvis on the left side that had also partially collapsed my left lung. The ER docs consulted all kinds of surgeons and no one would "touch me". And I was not a canadite to have a drain inserted. So I lived with this hematoma for 9 months before it was reabsorbed. I couldn't return back to work during that time. My family doc kept increasing my meds. Nothing worked. MOre than a year later I got into a chronic pain clinic. I had injections done! Nerve blocks, I have been botoxed like crazy to many different muscles. I have had 2 pain drs give up on me. I have since had 2 other surgeries, I had my hysterectomy and left ovary removed 18 months ago. The pathology showed like many of you I had adenomyosis. Since my hysterectomy, the only positive thing I feel is that I get back that 7-10 days a month that I would lay in my bed crying. I had 2 different types of pain!! I am still struggling every single day with pain. I continue to do their injections, physio, massage, reiki ,I have also done accupunture, traditional Chinese medicine, all kinds of energy work. I struggle with going to work very part time. I get through my day or two then spend the next several days recovering from it. My current pain doctor is at his end too. Comments like "nothing I do seems to work, what do you want" or my favorite" it seems like you are on a lot of pain meds, I am not the going to police the amount you take". Trust me I am sure I could more than double what I do. I try hot baths, heat packs, stretching etc before I take breakthrough meds. I have decided that I am sick and tired of feeling sick and tired and I am slowly coming off of all my pain medications. My kids don't know what mommy is like without pain. I think it is very sad!! I also feel frustrated that my doctors seem fixated on what they think the problem is. But all the treatments they do don't work. I have tried most of the medications out there and I get very little relief if any from most of them. I have grown to accept that I will always have pain, though my dr seems to think that because it was caused from a traumatic event it will get better. I have been doing this every single minute of every day for 4 years!! No one tells you that chronic pain changes relationships. Thankfully I have a great husband, who has seen me at my worst and when I am really not having a good day cleans up, takes the kids out etc. my family too has been awesome. Some of my friends, well, I no longer discuss my pain with them. I think many people just don't understand it. It sometimes makes you feel like you are crazy and it maybe is in my head
I am curious though, what kind of diagnosis' have you gotten besides pelvic chronic pain? Is there a nerve? I know that I have a lot of neuropathic pain? Has there been any treatments that you have found the most helpful?
Thanks again for sharing your stories!!! It is reassuring to know that I am not the only one who struggles with this
I am 37 years old...and I have been in pain since age 20. After several diagnostic laps, I decided that I had enough of the pain so I had a hysterectomy last May. They removed my uterus (adenomyosis) as well as endometriosis located on my rectum. All of this was supposed to relieve the pain and help me go to the bathroom again. Well...almost ONE year after the hysterectomy, I am still in pain...and I still have trouble and pain when I try to go to the bathroom. Doctors seem to have no idea what's going on. They went in and did another diagnostic lap on me last December to see if there were adhesions from the hysterectomy...there were no adhesions. Then they did a colonoscopy in January to see if there were any problems in my colon. They found nothing but a polyp which they removed. So...again...here I am...37...and I can't exercise...I can't take walks with my 2 sons...I can't even play baseball with them in the backyard. I HATE IT. The pain is all through my abdomen now...sometimes it is all over...and other times it is very sharp and one sided...much like an ovarian cyst. Doctors just pass me off from one to another. Nobody seems to know the answer. Accompanied with the pain now comes bouts of nausea and bloating. I also have dizzy spells. It's awful. Does anyone out there have any answers? Im so tired of this...
thanks
mk
MEDICAL / PROFESSIONAL PROVIDERS
David Wise, Ph.D.
Explaining The Details Of Physical Therapy Used In The Wise-Anderson Protocol
- Pelvic Pain Help - A Headache in the Pelvis - Physical Therapy
National Center for Pelvic Pain Research, Box 54, Occidental, California 95465 Telephone: 707 874 2225 Fax: 707 874 2335 Email: ahip@sonic.net, Privacy Policy
- PELVIC HEALTH & REHABILITATION, 2000 Van Ness Ave, Suite 603, San Francisco, CA 94109
Pelvic Health and Rehabilitation Center of San Francisco Provides physical therapy treatment for pelvic pain, pre-and postpartum women, Urinary, Bowel and Sexual Dysfunction
- BEYOND BASICS PHYSICAL THERAPY, 165 W 46th Street , New York, NY 10036
Amy Stein, MPT, and the professionals at Beyond Basics Physical Therapy in New York City (Midtown Manhattan) take an integrated approach toward physical therapy, rehabilitation, and fitness.
- CROFT PHYSICAL THERAPY, LTD., 408 E. College Avenue, Normal, Illinois 61761
Croft Physical Therapy is the first and only physical therapy clinic in central Illinois devoted exclusively to the diagnosis and treatment of pelvic floor dysfunction.
SUPPORT AGENCIES LINKS
- MYOFASCIAL THERAPY AND RESEARCH FOUNDATION
Home based MFR managements for pelvic floor dysfunctions (5 Series) - NATIONAL VULVODYNIA ASSOCIATION
Organization created to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain disorders. - AMERICAN PAIN FOUNDATION
Organization serving people with pain through information, advocacy, and support. - INTERSTITIAL CYSTITIS NETWORK
The ICN is the largest IC support group in the world, providing patient educational materials, 24/7 support forum, the latest IC research, physician listings, subscriptions, newsletters, guest lectures, clinical trials, drug glossary and much more. - PATIENT ADVOCATE FOUNDATION
A National Network for Access to Care, Job Retention, Appeals, Education for Health Care.
ARTICLES
Disturbing Trend
I am a chronic pelvic pain patient and as a sufferer of this disorder, I do Google searches every couple of weeks just to see what is new in the treatment of pelvic pain for women (and men - although I am not that familiar with their equipment). I also belong to a couple of Internet groups specifically targeted to pelvic pain and I am/was my doctor's guinea pig as we traveled the road to cure together. New research or results is shared with my groups and my doctor's office. We are fighting to regain some resemblance of the life we used to have before our bodies went into muscle overdrive.
A couple of days ago, I found a website that was targeted to pelvic pain sufferers in my state. Surprised, I clicked into it. Not to be a smartypants but because I am unable to move around much, I spend a lot of time researching and I am pretty familiar with who the doctors are that I would consider experts in this metro area. It is a very short list of professionals that I would send a friend or family member to if they developed this nightmare of a syndrome. I did not recognize either name and that alone made me start looking into both professionals.
Written by an area urologist, the web site has just one page that summarizes chronic pelvic pain (actually not even a whole page) and a separate column promoting a group meeting with a physical therapist. After doing research, I became more and more disgusted with the whole thing. Nowhere was there a space for questions, comments, research, not even an address. Trust me when I say that you cannot sum up chronic pelvic pain in a web page. The only articles I could find on the urologist had to do with studies of AIDS patients and a couple of ratings by former patients. In other words, the website was a set up to get new patients for the physical therapist. A physical therapist who does not give any information about her background on the web page, nor any information about her expertise in treating pelvic pain.
This is part of a disturbing trend that has developed over the last couple of years. Pelvic pain sufferers are a desperate group and unfortunately, the sharks have begun to take notice. In their quest for relief, these women will try almost anything. Some women have no choice but to stay within the guidelines of their insurance companies but other women, those with more disposable income, are doling out big bucks in hopes for a cure.
It angers and frustrates me....these people who would take advantage of someone in pain. It seems almost everyday, we are having to head off and redirect women away from those who promise miracles. There are no miracles and cures seem to be few and far between. There are those who have recovered so it gives us hope. Unfortunately, it is knowing that we have hope that makes us the perfect targets.
I believe that treatment for chronic pelvic pain -- in most cases -- should begin with an ob/gyn, a physical therapist and a psychologist as the basic team of treatment providers. After arming oneself with the knowledge of exactly what the diagnosis is (pelvic floor myalgia, levator ani syndrome, interstitial cystitis, IBS, fibromyalgia, etc.), what treatments are available (physical therapy, trigger point injections, botox therapy, medications, counseling, etc.) and which ones have actually helped calm down or end the pain (usually a combination of therapies), then pelvic pain patients can add other professionals such as an urologist, acupuncturist, massage therapist, etc.
Today, more than ever, women need to be their own patient advocates. No one should be getting rich off your pain.
What Does A Women's Health Physical Therapist Do?
SUPPORT GROUPS
Yahoo Support Group
- http://health.groups.yahoo.com/group/happypelvis/
happypelvis: Happy Pelvis
Tennessee Woman 23 months ago
I can't believe I ran across this web page. You just told my story, my daily story for the past 4 years. I am so frustrated, and the pain is debilitating. I too have a doctor I can finally trust, and he's been great not to give up on me. He's sending me to a Neurologist next week to see how nerves are playing into all this.
I'm one year post-op from my hysterectomy. I've gone thru several laparascopies, procedures to remove countless cysts, polyps, etc., and had a very painful bout with Lupron Depot (which I have renamed "Satan"...ha!). And, after my hysterectomy, I had adenomyosis as well, which explained the additional pains.
I am in severe pain every single minute of every single day. I can't sit up long enough to have a desk job, and standing for any period of time is just out of the question. The only position I'm comfy is in my bed, laying in the fetal position. But you know as well as I do how depressing the bedroom can get after days and days on end of bed rest.
I'd like to keep up with you if that's possible to see what your doctor finds. I'll let you know how my neuro consult goes next week as well!
Thanks so much for posting this!!!