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Embarrassing admission/question for gals

alcbaalcb Posts: 140
edited 06/11/2012 - 8:26 AM in Back Surgery and Neck Surgery
Ok...let me start off with this icon: :jawdrop: it will preface the question. My history is below. I'm facing a possible 360 revision of my L5/S1 b/c of pain. About 3-4 months after my surgery...until now, I am having really bad coccyx pain. When I sit, stand up, cough, laugh etc.. It's really focused right at the very tip of my coccyx where it turns anterior and upwards. I have researched this on the internet and can't find anything on it (except plenty of freaky sites), but when my husband and I are intimate and I am close to "that special peak" :/ I will start to get a really bad pulling sensation at my coccyx tip. Now most of the time it instantly ends any chance of a "special peak" because of the pain, but if it doesn't and it happens OH MY GOD...I am shoving my poor husband off of me and crying. The pain is a 10/10 and it feels like a mix of someone trying to rip my tailbone forward out my body, or stabbing me relentlesly in that tip area. It all feels like it's connected too tight--like titanium cobwebs.

I know that the coccyx has ligaments and muscles attached to it, but I also know that the S1 nerves lead to that area. So, my dilemma is whether this pain is tailbone or L5/S1, and do I expect the revision will fix it, or do I ask about having my coccyx removed/flooded with steroids? Could it be scar tissue? Am I the only one suffering with this?? Does anyone have a cure or idea on how to cope?

I know it's a really odd thing to ask, but it's painful and emotionally debilitating. My poor husband is to the point of stopping to ask if my noises are happy noises or pain noises. Gotta love him for going thru all this with me. Feel free to PM me for shy responses-I totally understand. I wouldn't ask, but for all that my back problems have taken away from me...this is just one thing I refuse to let it completely steal. I have started to come back from nerve damage in that area-just to have this happen. Geesh.


  • I have the same tailbone pain since surgery, very intense stabbing/throbbing when I move to fast, cough, sneeze, etc (haven't had relations yet /:) )
    I feel like mine is hardware related and it has eased up some this past week but I am only 3 1/2 weeks post fusion.
    I am hoping this will diminish with time but in your case I would definately talk to your Dr about it. Has this been going on since your 07 surgery?
  • I don't really have a direct response to your issues, but I do have a couple comments. First, there are so many nerves in the whole pelvic area that I think it is really difficult to separate out what sensations are caused by which nerves.

    I had a one level PLIF at L4-5 a year ago for spondy and bad stenosis which caused terrible sciatic pain. I came out of surgery with a new pain that ran down the front of my thigh. This caused a great deal of pain in the entire pelvic region. Whenever I would have any stimulation in the genital area, I would develop intense pain and sometimes, spasms.

    There are some spinal specialists who are now making the link between pelvic floor dysfunction and lower back pain. This is particularly common in women as childbirth stretches all those muscles and ligaments and most of us aren't very motivated to do Kegel exercises every day as we probably should. The soft tissue stretches, which often results in the pelvis tipping forward which pulls the spine out of proper alignment. This can result in back pain that can mimic the pain of a ruptured disc, etc.

    Not all spinal specialists are willing to acknowledge that soft tissue can be responsible for back pain, but it makes sense to me.

    I went to a spinal clinic where the doctor believed there was a link. I went to a physical therapist who only treats back issues. She has additional training in treating pelvic floor dysfunction using biofeedback. I tried a couple sessions to see if it might help with my nerve pain.

    You might want to explore this concept to see if there might be some connection to your issues.

    What might be happening in your case is that there is probably irritation at the S1 nerve. There may be inflammation, etc. When you have sex, there is additional blood flow to the whole area. The stimulation probably causes the tissue to swell a bit, which might be putting additional pressure on the nerves.

    You may find that you cannot have sex comfortably until you can minimize the nerve pain.

    -- just some thoughts for you to ponder -- :S
  • I would highly doubt surgery would deal with this. I haven't found a single doctor who will even discuss this, other than to yell "Don't let them touch your tailbone". Let me explain: I have had 2 therapists, one a manual physical therapist and one more of a massage/myofacial therapist tell my my tailbone is going the wrong direction. They have put their fingers where you can imagine is the best place for that and they have moved the tailbone as you describe. OMG.

    When I was 19, I did a backflip off of a high dive (I do not know where that girl went.....anyway) I landed butt first and stayed under water. My boyfriend at the time pulled me out and I was dying. Sat sideways all the way to the doctor, where he put his fingers up there too (rectum) and said "Yep, you broke your tailbone. Get a donut pillow".

    So since then, I have always wondered if my tailbone improperly healing had anything to do with my L5-S1 problems. The manual physical therapist said that if I let her fix it, I would hurt like I have never hurt BUT it would fix it and I'd be all better. I told my doctor at that time and he freaked out. Said there was NO WAY that was even possible, although he didn't check it out.

    Then we moved, and in the new town the massage/myofacial therapist said the same thing. I guess my tailbone is REALLY going the wrong direction. And I asked that doctor and he freaked as well, "Don't let her touch your tailbone!!!:". Yet he didn't check xrays or anything to truly give his opinion.

    Luckily, it does not affect me in the way it affects you. So I have no idea truly, but my experience is that NO, the surgeon won't even notice. Mine sure didn't and I've had 3 surgeries at L5-S1 and you'd think if my tailbone were THAT jacked up, they would have seen it.

    Good luck - I hope you can get something done. If all else fells, try to find a "manual physical therapist" in your area. They behave completely differently than traditional physical therapists.

  • I have a tailbone that has "gone out" a number of times and each time I have had it put back into place. However this has been done EXTERNALLY not internally.
    A lot of women break their tailbones during childbirth and it is not uncommon.
    I dont know what your therapists have done to you but for me it was simply to push it back into place.

    ALCB - maybe you need to get an X-ray of your tailbone. Often it wont show up on a lumbar x-ray unless specifically requested.

    Blessings Sara O:)
  • and mention this to the doc.

    The nerves are all linked. I have an exacerbation of my symptoms when i open my bowels and intimate function is another area to watch.
    More obvious in men....but your doctor is not a mind reader!
  • alcb, I've posted a link to a coccyx pain site. There are various causes of this. You can read about it at the site below, but it really would be best to call your doctor and see what he/she can do for you.


    Hope you feel better soon!
  • Here is a link to an animation about what you're experiencing. Hope this makes you feel a little better.

  • I have been wondering how you were doing and if the second opinion doc had recommended surgery. Hang in there. Terri
  • I experience horrible sharp, stabbing, pains in my hootie(vagina) and bootie(rectum.) Sometimes nothing brought them on, sometimes sitting in an upright posture or walking in an upright, correct, posture would bring them on. It felt like a knife was being stuck in those orifices. Sometimes it even hurt to put in a tampon. Sex was horrible because it hurt so much(of course it would if a knife was being jammed in there! :) ) I also felt like a screw was coming out of the top of my butt crack. I know it wasn't, but that's how it felt.

    Anyway, my surgeon felt that it might be related to my S1 screws being so large. I had hardware removal in two separate surgeries and the last one was Thursday, so I haven't had a chance to check out the intimate issues, but the randomn sharp pains are gone for now anyway. Maybe you're screws are too big and are pushing on the nerves in that area? Just a thought to consider, you might bring it up with your surgeon on pain guy. And as much as it hurts us, I feel really bad for my husband. Poor guy, he has been trying to help me as best as he can and now I can't even have sex without crying.

    You might try talking with the doctor's nurse first about it. Of course you should talk to the doctor too, but some of the doctors are embarassed themselves. They shouldn't be embarrassed, but they are human too(well,most of them are human.) Sometimes the nurse can run interference for you and bring it up to the doc in a way that he can respond to without just handing you a booklet about positions. But I do think it important your doc know and it really could be something as simple as the hardware being too big and pushing on those nerves.

    Good luck to you, please keep us updated as this is a topic that is very much a problem for me, too and I want to hear success or helpful stories!

  • My son-in-law has been going through pains like you discribe in the tailbone/butt area. He had the hardware removed and still had the pains. The Dr ended up burning the nerves (RF ablation). First the Dr injected lidocaine to see if he was in the right spot before the actual ablation. He did the left side during one visit and right side during a later visit. The pain is much better.

  • I only let them work externally because I couldn't get a doctor to OK the procedure, but the manual therapist said it ideally would require internal and external adjustments together. We ended up moving quite suddenly, and never followed through on it. We moved to an area where there were no manual PT's.

    When the massage/myofacial therapist mentioned it, I was surprised. They both acted shocked how bad it is. Like when they put their hands near their to adjust gluteal muscles or something, they feel this coccyx sticking out in entirely the wrong place. lol

  • I am a little over four weeks out from combined anterior and posterior L4 - s1 instrumented fusion. Prior to surgery, I would experience sometimes the stabbing pains described in my hootie. I too have not yet been intimate with my husband since my surgery. My question is does anyone know of a booklet or link to something recommending positions post lumbar fusion? I am not looking for naughty links here just suggestions on how to make a return to intimacy a positive experience.

    Feel free to PM any info ... sorry for the intimate topic. :< :<
  • Hey there,

    I'm not sure about the original post, but have a few ideas on the hootie and bootie pain that may apply to others. I had nerves burned during a laparoscopy (pelvic surgery for endo w/ laser) and have done a lot of reading to understand what is going on and why certain things can't be done, as well as lots of nerve blocks. I've also had back surgery, a disc excision in 1991 at L5-S1, and last year a 360 fusion L4-S1. As you can guess, lots of this overlap, like bowel problems, which have improved after the fusion. I had a lot of bowel weakness and it's improved a lot, so that would be in the area many of us have had sugery. From the nerves being burned during pelvic surgery, I have nerves from L1 to lower sciatic burned. For reading reasons, I'll try to make this clearer:

    Pudendal nerve- in women, the groin and labia, plus inner labia would hurt. Can also be felt inside and a bit toward the rear.

    Genital-femoral- this one, if you end up looking at a Gray's Anatomy picture, is called the crural. My guess would be since so many of us have this near our surgeries, there is a good chance this could be affected. Can cause both pains.

    I also have the hypogastric and ilioinguinal diagnosed, and the latter comes out where men are most likely to have hernias in the lower pelvis to groin area. When I had blocks, she'd take the needle through this canal. This is upper left into the groin area. Ilio is also up at the hip, where I had blocks too.

    I also have the obturator nerve injured, which is the most disabling as far as walking since it affects the hip and adductors. This one isn't commonly injured and my pain doc had only seen it injured in people who were paralyzed.

    I'm blanking a bit on this, but think it's the genital-femoral or ilio-inguinal that causes the pain about 1/2 inch toward the side injured from the hootie wall to the bootie. Whenever I do inner core work and have to Kiegels when doing sit-ups, etc. it starts the horrible burning. This was insane for years, but Lyrica and Methadone has helped a lot. Hope this wasn't TMI! If you do a search on this, you'll likely come up with some anatomy pictures that could help the pain you have more understandable, and hopefully can get some help with it. Good luck everyone.

  • I am so appreciative of all your stories and information!!! I will certainly look into all of it! This is just so frustrating!!! I'm glad-yet sad to see I'm not alone. As always Angie you make me LMAO!!! Hootie and Bootie will hopefully live in harmony one day! :) Thanks for your continued support Terri! How's Chris doing? I've been trying to follow your posts for the sporadic times I'm on.

    I will certainly pass any info on! I see my ortho surgeon on Thurs. He's really a quiet, southern gentleman....I may have to ask his outspoken, blunt female PA! :) I'm just so desperate to get back to normal, and I hate to think about my 20th wedding anniversary ending in tears this March. As you all know the drill...to much medication you feel less pain and NOTHING else....less medication you feel everything, but it's all pain. Chronic pain and medical problems can tear a relationship apart, and I always emphasized to my patients that there are other ways to show affection and be close, and that sex isn't the only thing to focus on in a relationship. However, going through all this, I can really empathize that it can make you feel old, tired, unattractive, boring, whiney, and in cases of this-less of a woman. My husband tries so hard, and is patient in all aspects of this. I couldn't have survived all this without him. I am very ready to be the person he married again, and allow him to treat me as a woman, and not something that's going to break (or break down)with the slightest touch. Ahhhhh....someday.... :( Love you guys!!
  • Saw surgeon yesterday and he thinks the pain is S1 with possible coccydynia. With my surgery I'll have my NS back in there, so at my pre-op I'll ask him about all this as well. OS didn't know what to make of it.
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