Chronic left side pelvic pain

Posted by Maran @help123, Jul 7, 2022

I have been suffering with left side pelvic/lower abdominal pain since Jan of 2020. Originally treated for diverticulitis which was eventually ruled out after not 1 but 2 colonoscopies. I was then told by an Obgyn I had endometriosis and had a hysterectomy leaving both ovaries in June. Within weeks I could tell my pain was still present and wasn’t just healing from major surgery. On top of pelvic pain, I now also had hip/back pain. After denied requests to insurance, my doctor finally got an MRI approved in Dec. It was discovered that I had a large ovarian cyst, so that ovary & cyst were removed in Feb of 2021. It was also discovered that my pelvis was tilted on the MRI. Things seemed better until about 3 weeks later when I once again had horrendous pain only higher up across from my belly button. My new obgyn guessed nerve damage from surgery. I started on gabapentin and slowly that pain went away, but about 8 weeks later the lower left pelvic pain returned. I have been on Gabapentin & Amitriptyline for over a year, muscle relaxer for a short time, and have had injections for my back/hip pain. I’ve also been in PT since Aug of 2020. The left side pelvic pain persists, flaring worse for approx 8-10 days each month but it is always there. It’s aggravated by lying on either side, sitting for to long, or walking to long. I have seen GI doctors, gyno, & have seen 5 different PCP with no answers. I have seen 2 pain specialists, one being at our University hospital and the best guess is maybe nerve entrapment BUT none can explain why it can be better for 2 weeks and then suddenly flare to off the chart pain levels. They have submitted referrals to Mayo and I continue to be turned away. Does anyone have any tips on how to get into Mayo besides knowing someone that works there because I’ve been told that’s the easiest way. I’m at my wits end. Being in constant pain with little to no relief isn’t fun.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Hello @help123 and welcome to Connect. I'm really sorry to hear of the chronic pain you've been experiencing and your inability to get an appointment at Mayo. I can only imagine how frustrated you must feel.

I would like to introduce you to Chris Trout, @artscaping, as she also persisted for five years before she got an appointment at Mayo Clinic. Here is a link to a post where she described how she persisted and the various steps that she took, https://connect.mayoclinic.org/comment/718994/. This post came from a discussion on Connect titled, "Can't get an appointment: Any tips on what to do?' Here is a link to that discussion and all who posted about this same situation, https://connect.mayoclinic.org/discussion/cant-get-an-appointment/.

While I know that you have been to pain clinics (and probably pain specialists) please know that Mayo Clinic also has a Pain Rehabilitation Center which you might find helpful. Here is a link for information about that Center, https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/conditions-treated/orc-20481885. Another Connect mentor, Rachel, @rwinney visited that Pain Rehab Center at Mayo and received tremendous help. This is different than a Pain Clinic (I see that you have been to other pain clinics) and I'm sure that Rachel can describe it better than I could.

You have certainly been dealing with pain for a long time, now. Have you found significant relief in anything you have tried?

REPLY

Hi! I self referred to Mayo in Arizona and didn’t have any problem getting in. None of the docs could figure out what was wrong with me and I left very disappointed. I saw a neurosurgeon, pain specialist and gynecologist. I travelled from Washington state for 2 years to meet with these docs. Maybe Minnesota is better??

REPLY

Thank you both for responding. I have only tried Mayo in Rochester, MN. It’s about 3.5 hours from me so within driving distance. I guess I have my doctors keep trying, as will I. I’ve heard from many that you have to know someone to get into Mayo in MN. I hope that’s not the case, but from things I’ve heard it does seem that way. As far as things that help, I live on heating pads, take Tylenol and Aleve. Gabapentin, amitriptyline and get toradol shots on days that I just can’t take it. Hip/back injections, and trying a gastric ilioiguinial nerve block next. So far, not much relief with any of it, but it makes it so I can function.
I, more then anything want a diagnosis, and if I can’t get that something, anything to bring me some relief. It’s getting hard to live everyday like this.

REPLY

@help123 Hello, Maran. I have so much to say, and offer, especially given your age and circumstance. It's tough for me to read your bio and opening thread requesting help, as I was once where you are now. Thank you to Teresa @hopeful33250 for making me aware of your request for help.

I'm sorry that you are in this place of uncertainty without a firm diagnosis for your continuing flare ups of pain. Your surgeries (which were def needed by the sounds of it) appear to be successful, a prior inaccurate diagnosis of diverticulitis, the plethora of meds you are on, shots, injections and blocks, heating pads, You my dear are trying, and persevering, that gets taxing and definitely adds to pain flare ups. It's awful when all you hope for is a solid, "this is what you have", so you can fix it and get on with life. I do think your new OBGYN is correct and that you are experiencing nerve pain.

Being turned down by Mayo is like a punch in the gut. I was turned down too which for me meant, think outside the box. I found this video by Mayo Clinic's Dr. Sletten talking about Central Sensitization Syndrome (CSS). I had learned of CSS through my own research and when I watched this video, a lightbulb went off. I burst into tears and made my husband watch it with me again. It finally gave definition to my mystery of chronic pain that no doctor could explain. It answered why treatments were not really working for me and why nothing showed up on tests.

I'm not a doctor and don't know if there's something bigger to your picture. Maybe your OBGYN is on to something. Maybe pursuing Mayo is important because you still need to be sure and rule more possibilities out with a top notch facility. Maybe other members will offer ideas or experiences to help.

In the mean time, here's the video by Dr. Sletten:

Please watch and see if it resonates with you and some of the things you've been going through the past 2.5 years. If nothing else keep the information on the back burner while you continue to pursue other answers. Not for nothing, doctors don't have much of a clue about thinking outside the box. They tend to stay in their lane.

Will you let me know your thoughts on the video? I'd love to help in any way I can…support. encouragement, letting you know that you are not alone and there is hope.

REPLY
@help123

Thank you both for responding. I have only tried Mayo in Rochester, MN. It’s about 3.5 hours from me so within driving distance. I guess I have my doctors keep trying, as will I. I’ve heard from many that you have to know someone to get into Mayo in MN. I hope that’s not the case, but from things I’ve heard it does seem that way. As far as things that help, I live on heating pads, take Tylenol and Aleve. Gabapentin, amitriptyline and get toradol shots on days that I just can’t take it. Hip/back injections, and trying a gastric ilioiguinial nerve block next. So far, not much relief with any of it, but it makes it so I can function.
I, more then anything want a diagnosis, and if I can’t get that something, anything to bring me some relief. It’s getting hard to live everyday like this.

Jump to this post

Good evening @help123. I am the lady who knocked on the Mayo Clinic door several times over a five-year period, Chris Trout. I am thrilled that I was accepted as a Mayo patient as you will read in Teresa's link to my post. Have you tried an online application? The form lets you use your own words to present your need for help. I was also impressed with the last section called the Wrap-up….sort of your bottom line need for assistance. Our own words sometimes are received differently than just a completed form. However, I don't know the answer and yet I am sure that admission to Mayo isn't just offered to those who know "someone". I know my life partner and he has been a Mayo patient since he was two years old. He is a prostate cancer patient and I am his caregiver.

I want to say keep trying and in the meantime may you be free of suffering and the causes of suffering.

Chris

REPLY
@help123

Thank you both for responding. I have only tried Mayo in Rochester, MN. It’s about 3.5 hours from me so within driving distance. I guess I have my doctors keep trying, as will I. I’ve heard from many that you have to know someone to get into Mayo in MN. I hope that’s not the case, but from things I’ve heard it does seem that way. As far as things that help, I live on heating pads, take Tylenol and Aleve. Gabapentin, amitriptyline and get toradol shots on days that I just can’t take it. Hip/back injections, and trying a gastric ilioiguinial nerve block next. So far, not much relief with any of it, but it makes it so I can function.
I, more then anything want a diagnosis, and if I can’t get that something, anything to bring me some relief. It’s getting hard to live everyday like this.

Jump to this post

My doctor called Mayo MN at our appointment and I was scheduled right then in her office with Mayo. First appointment was about 2 months wait. But has been moving along since. My Mayo doctors have everything that can be done locally her in Michigan ordered and done and sent to them. Then we talk and decide nest steps. I am back 3rd trip to MN next week July 16th -20th. More testing to see if my intestines can handle enough pressure to withstand surgery. If they can next tests on kidneys for same. If all goes good surgery will be explained and decided on. If not. Well- there is nothing else they can do. And my doctors have been compassionate but upfront and honest with us. Just for today I am going to have faith that God’s in charge not me. I just do the footwork. Good luck on all your journey’s.

REPLY
@rwinney

@help123 Hello, Maran. I have so much to say, and offer, especially given your age and circumstance. It's tough for me to read your bio and opening thread requesting help, as I was once where you are now. Thank you to Teresa @hopeful33250 for making me aware of your request for help.

I'm sorry that you are in this place of uncertainty without a firm diagnosis for your continuing flare ups of pain. Your surgeries (which were def needed by the sounds of it) appear to be successful, a prior inaccurate diagnosis of diverticulitis, the plethora of meds you are on, shots, injections and blocks, heating pads, You my dear are trying, and persevering, that gets taxing and definitely adds to pain flare ups. It's awful when all you hope for is a solid, "this is what you have", so you can fix it and get on with life. I do think your new OBGYN is correct and that you are experiencing nerve pain.

Being turned down by Mayo is like a punch in the gut. I was turned down too which for me meant, think outside the box. I found this video by Mayo Clinic's Dr. Sletten talking about Central Sensitization Syndrome (CSS). I had learned of CSS through my own research and when I watched this video, a lightbulb went off. I burst into tears and made my husband watch it with me again. It finally gave definition to my mystery of chronic pain that no doctor could explain. It answered why treatments were not really working for me and why nothing showed up on tests.

I'm not a doctor and don't know if there's something bigger to your picture. Maybe your OBGYN is on to something. Maybe pursuing Mayo is important because you still need to be sure and rule more possibilities out with a top notch facility. Maybe other members will offer ideas or experiences to help.

In the mean time, here's the video by Dr. Sletten:

Please watch and see if it resonates with you and some of the things you've been going through the past 2.5 years. If nothing else keep the information on the back burner while you continue to pursue other answers. Not for nothing, doctors don't have much of a clue about thinking outside the box. They tend to stay in their lane.

Will you let me know your thoughts on the video? I'd love to help in any way I can…support. encouragement, letting you know that you are not alone and there is hope.

Jump to this post

@rwinney thank you for sharing the video. It’s very interesting, and I plan on watching it again with my husband. While some of it resonates with me, other parts don’t although that could be because I want answers to what is causing this so badly. I’m on day 3 of an awful flare, so I’ve decided to watch again it calms down. For me, my biggest question remains of, if this is truly all from nerve damage, how did it start to begin with- since it did start before I ever had surgeries and why does it flare every month? I know I need to start thinking outside the box more instead of in black & white. Search those gray areas but sometimes it’s so hard. Glad I found this group, reading through posts gives me some hope.

REPLY
@help123

@rwinney thank you for sharing the video. It’s very interesting, and I plan on watching it again with my husband. While some of it resonates with me, other parts don’t although that could be because I want answers to what is causing this so badly. I’m on day 3 of an awful flare, so I’ve decided to watch again it calms down. For me, my biggest question remains of, if this is truly all from nerve damage, how did it start to begin with- since it did start before I ever had surgeries and why does it flare every month? I know I need to start thinking outside the box more instead of in black & white. Search those gray areas but sometimes it’s so hard. Glad I found this group, reading through posts gives me some hope.

Jump to this post

@help123 Yes, hope, keep it alive because no matter how hard things get, they won't stay that way forever.

Again, I have no clue if what you're experiencing is in fact CSS. Please keep in mind that not every symptom or circumstance in the video apply to each person. Watch with grey area in mind. Maybe your husband will be helpful. It's always better to have a second set of eyes and ears.

Speaking of eyes, a little about me, I had corneal transplant and cataract surgeries when I was 43, and although my vision was corrected and the surgery was a success, it began an upregulation of my central nervous system.

Sometimes surgery, stress, an accident, can create CSS. There is no MRI or CT scan to prove the upregulation, it's process of elimination and ruling out causes until there are no answers and it comes down to management of symptoms. Also, assessing failed treatments, inexplainable pain or symptoms, emotional distress.

I only share this with you because I was the person looking for answers for 3 years, and by age 46 I was no longer able to work and became disabled. I drove myself crazy, being a perfectionist, not accepting my symptoms and going down many rabbit holes.

You're in good hands here on Connect. I'm sure you'll continue to receive support and encouragement as you navigate your condition. I'm rooting for you and keeping hope alive!

REPLY
@rwinney

@help123 Yes, hope, keep it alive because no matter how hard things get, they won't stay that way forever.

Again, I have no clue if what you're experiencing is in fact CSS. Please keep in mind that not every symptom or circumstance in the video apply to each person. Watch with grey area in mind. Maybe your husband will be helpful. It's always better to have a second set of eyes and ears.

Speaking of eyes, a little about me, I had corneal transplant and cataract surgeries when I was 43, and although my vision was corrected and the surgery was a success, it began an upregulation of my central nervous system.

Sometimes surgery, stress, an accident, can create CSS. There is no MRI or CT scan to prove the upregulation, it's process of elimination and ruling out causes until there are no answers and it comes down to management of symptoms. Also, assessing failed treatments, inexplainable pain or symptoms, emotional distress.

I only share this with you because I was the person looking for answers for 3 years, and by age 46 I was no longer able to work and became disabled. I drove myself crazy, being a perfectionist, not accepting my symptoms and going down many rabbit holes.

You're in good hands here on Connect. I'm sure you'll continue to receive support and encouragement as you navigate your condition. I'm rooting for you and keeping hope alive!

Jump to this post

REPLY
Please sign in or register to post a reply.