Fibromyalgia complicates surgery decision

Hello
I'm a 62 year old woman who has lived with cervical displasia for many years.
I've had cone biopsy surgery, cryosurgery and three LEEP procedures done. My current OB/GYN has suggested having a hysterectomy.

I am here to learn everything I can, before I consent to having the surgery performed. Having Fibromyalgia makes any surgery more painful for me and the healing time extended.

It would be nice to hear from another person with FMS, who has gone through having a hysterectomy.

I am glad you have found our site and I hope that we are able to offer you some helpful information and support!

My fibromyalgia was not diagnosed until after my hysterectomy. However, I had to have additional surgery following my hysterectomy so I do know what it is like to have a gynecological surgery with fibromyalgia!

First, I commend you for looking for information before making your final decision about a hysterectomy! It is a major surgery that is not without risks so you do want to be 100% sure it is the right treatment plan for you! Second, I highly recommend a second opinion before you undergo a hysterectomy.

If you do decide to have the surgery, here is my best advice for handling the surgery with fibromyalgia.

Make sure all doctors involved are aware of the fibromyalgia. I had to see a specialist for my last lap and I made sure he knew beyond a shadow of a doubt that if he did not take into consideration the pain in my upper body, I could not allow him to treat the pelvic region. The upper body pain was too severe and I could not handle anything that would worsen it.

You did not mention whether or not you are in menopause or if an oophorectomy is being considered. You should discuss with all of your doctors the pros and cons of keeping your ovaries and how an oophorectomy could impact your overall health. It is looking like menopause may be negatively impacting my mother's fibromyalgia.

Before you schedule the surgery, talk to whomever treats your fibromyaliga. Work with that doctor to be on top of your pain before the surgery date. Also, have him/her on board to help manage your pain during recovery. For me, this meant my neurologist upped some of my meds prior to surgery and he helped me work around not being able to use my anti-inflammatory for several days leading up to my surgery. It also meant that my neurologist prescribed most of my pain meds during my recovery rather than my surgeon so that I could stay on track with what worked to manage my whole body pain.

Make sure the anesthesiologist is aware of your extra sensitive areas. For me, it was my neck. I made sure everyone knew this. So much so that when the anesthesiologist walked into my room for the pre op discussion he said, "I hear you have concerns about your neck!" When I got to OR, he took extra time and was extra careful when positioning my neck to help minimize the discomfort and pain from positioning during surgery.

Take your own pillows to the hospital and ask for an eggshell for your mattress if it will help you be more comfortable. Do what you can so you don't get cold and tense up--that could mean adding pajama bottoms, sleeping in your socks, bringing an extra blanket,etc. Doing whatever you can to be more comfortable during your hospital stay can help save you some pain down the road. Ask if you can use a heating pad and keep one handy if you can. At home, besides making sure you walk, make sure you carefully move all parts of your body so you don't stiffen up, starting a pain cycle. I recovered in my recliner with my heating pads but made sure to move around in my chair and not stay in the exact same position for too long.

If you find you are not resting, ask for sleeping meds. I was already using one and made sure to stay on it. Sleeping can be a problem for those of us with fibromyalgia and it can worsen during the initial recovery.

As soon as my surgeon would allow, I also went in for a massage. (I also had one right before surgery.) It can be awhile before you are allowed to soak in a tub but you can improvise a bit by sitting on a stool or chair and with a handle held shower head, let the water cascade over your body to help you relax. Having my feet rubbed would help me relax and let the muscles release.

We do have an article with some quick tips you might find helpful, Fibromyalgia and Hysterectomy, and you can do a site search to find other threads discussing the topic.

I wish you all the best as you work with your medical team to determine what is best for you! Feel free to poke around the site and post any other questions you might have!

wow -- thank you so much

I really needed to read this information. I have not told anyone how scared I am that I will be in horrible pain for months if I have the surgery.

Hi kmmc2108
Am I correct in assuming you have Fibromyalgia too? Yes, Weiser's information was very helpful to me also. I must apologize for being lax in replying to her most welcome post.

My 2nd opinion appointment was postponed to Sept 17th, so I don't have a decision yet. Living with FMS means we become anxious before any GYN procedure, much less impending surgery.

As you said, it's the longer and more pain filled recovery time we fear, not the surgery itself. Fear creates stress and extended stress brings on flare-ups or makes them worse. If you need to talk about this.... I am here, because I've "been there".

Some years ago I needed to have an invasive test done (the name of it escapes me) before gall bladder surgery. I told everyone who was involved in the testing, that I had FMS and that the pain from lying on the hard table, in the positions they needed, was becoming unbearable. I literaly begged them to put a pillow under my head, to help ease the terrible pain in my neck.

What happened? I was repeatedly told "I know, I understand.... but just hang in there, it won't be much longer." As for the pillow? Nope.... repeat the above quote.
The system won! Get this patient's test done and move on to the next one. Relief from the pain only came when they put me under, for the final step of the test.

This time will definately be different! As Weiser suggested, I will have a discussion with both my Primary Care Physician and my OB/GYN about my FMS complications. At this point it is still elective surgery in my case. If I am not comfortable with the response I get from the OB/GYN, at any point, I will get up and leave. Then I will find a Doctor who is more concerned about his patients comfort, than making money on surgery!

This wonderful site is helping us women fight the system. By helping each other, we can alleviate some of the fear..... and less fear gives us more power!

Thanks again, Weiser!

It's amazing that despite all of the mounting evidence that fibromyalgia is a complicated neurological condition that causes real pain, many medical professionals still think it's more of a psychological condition. My doctor took it into consideration in postponing a hysterectomy, wanted my fibromyalgia to be under better control so I could judge my pain levels from adenomyosis more accurately. Because the pain "pathways" are always open in fibro, any surgery causing accurate pain sensations will amplify the fibro. You're right to be concerned.

Hello WTPDF,
Wow, sounds like you have found a good GYN there!

Weiser's suggestions are pretty much what we can do as far preparation for surgery, but it may take some time to get your FMS pain under better control. Would you mind telling us how long you have had FMS and what you are currently using to help with the symptoms?

Your statement that many doctors still believe Fibromyalgia is a psychological condition, is so true! It's a shame that we, the patient, have to educate our doctors about it. Ahhh... I suppose that comes with the medical profession becoming so specialty oriented. If anyone needs help in finding good online support/information for your FMS, let me know.

Hi! Glad your here! I had a LAVH last Friday morning. I too have fibro. This was discussed at length with my GYN and my pain dr. So far my fibro after surgery is no different than before. I don't feel that it is interfering with my recovery at this point. I am really hoping that my fibro pain will get better after I am fully recovered. I am cautiously optimistic though. I suffer from depression too so don't want to set myself up! Surgery for me was a must because of all the pain and heavy periods for the last 3 years. At least one reason for my pain is gone I hoped I helped a little. Good luck to you
Cats

Congratulations Catsarecool!
Glad to hear you are doing so well and have suffered no flare-up from your surgery!

Could you please tell us what, if any, extra steps your GYN or pain Dr. took because of your discussions about your Fibro?
As you already know, I'm sure, depression is often a result of the relentless pain we Fibromyalgia patients have to deal with. Now that you have taken care of your extra source of pain, I think you will see an improvement in the level of your FMS pain.... and maybe your depression symptoms will lessen too.

Gentle hugs,
The Old Crow

First time back on the site in a week. Thank you so much for your response.

I am now in "hurry up and wait mode". My general surgeon wants to get my appendix out "soon". Met with Gyn last week at the hospital for a full workup and she said she wasn't sure about the hyster part - yet. Took a couple of biopsies, got quiet (would love to know what she was thinking) and said we would sit and talk in her office when the test results came in. So now I have to wait until Aug 31st for that appt.

My general surgeon has been wonderful. Explained about the fibro (and arthritis) and he is willing to schedule everything around the hyster timing. He said he and the Gyn have worked together for years, and this is prevent me from having 2 separate surgeries and recoveries.

I am also making an appt with my rheumatologist. Although she doesn't seem to do much I thought her input might be helpful in the recovery time. (No matter what they take out)

I am starting a list of what I need for the recovery.
A good friend who has had fibro over 10 yrs. is lending me a shower chair. If you have any specific items that you found helpful, I would love to know.

Thanks again.
Kathy

Hi, tomorrow is my 3 week mark. I had TVH with a&p repairs. I was diagnosed with fibro 4 months ago, after 5 years of pain (coincidentally I've been having trouble with periods for the same length of time). It has been a race to find a drug that works enough so that I would limit the chance of a flare after surgery. I went through 3 different type of anti-depressants that did little to nothing, I finally got reffered to a rhumatologist 2 weeks before the hyster was scheduled. My insurance didn't want to cover the new med, gabapentin (lyrica), so I wasn't able to fill this until 4 days before going under.
However, this med (for me) was a God send. I've been released to do light work, lifting no more than 15 lbs, stairs when I can, no prolonged standing or sitting. I am doing my best to follow these instructions so that I don't have a flare. I am able to go down stairs all the time, and upstairs once or twice a day (we have 4 flights to get to the apartment).
Don't get me wrong, I did have pain, a lot of pain, I had to fire a nurse because she didn't believe I could be in as much pain as I said I was because she had given me meds already (they didn't work, don't be afraid to make a scene if you need to). I have been off all narcotic pain meds for two weeks now, but I do have some tricks.
I still take some OTC meds but for the most part a heating pad and a tens unit(medical grade) keep the pain at bay.
I am really feeling better right now than I did before surgery, it may be because of finding a med that helps the fibro pain, but I know that a good part of feeling so well is because I do do the hard work of not over doing it!
Take it easy, if your body says no then that is the final answer.


I am not a doctor and the above is only my own experience. If it helps you get what you need from a medical professional that is great.
Have a wonderful recovery!