It’s been two weeks since my injections and people are already just assuming I’m feeling better, so I thought I should explain. No, I’m not. It’s worse. I was warned, but not quite enough. See, I was told I might get a “flare-up,” but I’ve never felt anything quite like this.

Imagine being cooked over a fire, boiled, burned, smoldering, along with being stabbed by small knives, all at once. I wish I could say I’m exaggerating, but unfortunately that’s what this pain feels like. It’s not that way all the time, so I’m lucky in that respect, but it can come on at any point from sitting or moving too much or whatever. This is way worse than any flare-up I’d had in the past from other activities that might have exacerbated my pain. Sigh.

I was worrying about it a lot – this is scary pain – I can’t drive, I can’t sit, and I don’t know when it will get any better. The burning shooting pain is so bad it makes me shake and I nearly passed out when I tried getting in the car the other day. But the doctor wants me to wait it out and I will. Nothing else I can do.

Meanwhile, my life is definitely getting disrupted. I was to be at a conference this week – one I’ve been working on for months. I was to speak on three panels and I was looking forward to seeing a lot of colleagues and friends. Not only was it a great business opportunity, but it was an opportunity to meet like-minded people who care about a lot of important things and who want to make the world a better place. They’ll be talking about healthcare and how things need to change. I will miss being a part of that conversation, but I hope to participate online. If there’s anything I’ve learned over the past few years of dealing with pain and continued trials like these is virtual communities really can help people.

So while I feel worse, I’m also trying to be optimistic that resting and staying at home with my daughter is the best place for me to be. And I’m determined to make the best of it.

15 responses to “Worse

  1. I feel for you. I developed pudendal nerve entrapment giving birth to my one and only daughter (at 40, which still amazes me). All I can say is, go to Houston. It worked for me.

  2. At some point, Sarah, you WILL figure this out. It has already gone on too long, but I know you will get beyond this. I know you have many other things to write about and would love to have more time for those with less pain.

  3. Hi Sarah, I had no idea you were going through all this until just now. I’m so sorry. I’ve had my own rough struggle ever since my second was born 17 months ago and was finally diagnosed with Chronic Lyme Disease. Anyway, glad you’re writing this and I’m adding it to my blogroll.

  4. I have gotten epidural injections for my back and they are quite painful and take days to fully recover from. I hope that you do being to feel better.

  5. I developed PNE after an injury to my tailbone/perinium last year. I have had 11 steroid injections to the isheal spine and alcocks canal. I got a lot of relief from the constant injecitons, but not a cure. I am pursuing surgery now in Houston. I know what you are going through. It is a nightmare of pain in your most private of body parts. My life has turned upside down by this event. I appreciate your blog. Email me anytime! Alesha

  6. Hi Sarah –

    Forgive me if you’ve already been down this road – but a friend of mine was just diagnosed with Chordoma of the coccyx and that got me thinking about whether you’ve heard of it or looked into it.

    Here’s a website for the Chordoma Foundation

    I hope you find some relief soon!

  7. Ciao, I am a Swiss girl and have more or less the same problems you have! Everything started during the third trimester pregnancy. I lived the same horrible experience as you. And nobody believed I was in pain. People thought I had a post-partum depression (even if I my problems started before the delivery…)… No comment!!! It’s now 2 years and half… My pelvic pain (neuropathy) has improved in this time, but I still live in pain. I found some ways to get better. If you want some suggestions please write me! I am a biologist (PhD, was very active as genetist environmental researcher), so I have access to scientific journals and know how to find medical reliable answers in the web. So I did my search in these years. Hope I can help you a bit. Be strong! I was strong for my son, he’s my sun! Best from Switzerland, Barbara

    • Barbara – I’m always interested in what works for people. For me, time, rest, physical therapy and motrin have been the only things that have helped. All other treatments we’ve tried have either done nothing, backfired and caused worse pain, or resulted in unintended side effects.

      • – time: of course, (a long) time is necessary to heal. I think the most difficult thing about “time” is having patience. Sometimes I feel I cannot wait anymore… because in some days the situation becomes unbearable. But I am happy I was strong enough in these years to avoid steroid injections in the Alcock’s canal! I read in many forums (Italian, French, English and German ones) about desperate people who did this and had horrible worsening… Do not do that any more, even if it can work for somebody, for other it can be a total catastrophe for the rest of their life!!!
        – rest: what I learned about rest, is that the POSITION in bed is very important! Do you lie on your back all the time? Rest is sometimes necessary, but moving, even if it hurts, can help the nerve canal not to “fix” and therefore make your pain worse. I was forced to move due to my baby, and now I suddenly feel that resting is worse than moving in terms of pain! And I can guarantee: I even could not walk for 2 minutes two years ago, because my nerve was so aching that moving was just unbearable!!!
        – physical therapy: also fundamental. I did a lot of therapy and changed several pelvic floor therapists. With physiotherapy, I tried also reflexology, pranotherapy (!), psicological consultation, homeopathy, ago puncture,… And I finally tried shiatsu. Did you try? I found an Asian shiatsu therapist who did something nobody was able to do: she made me feel instantly better! I never believed it could work! Did you try? She found the energy in my pelvis was (not surprisingly) totally blocked. She managed to let the “current” flow again and it was incredible. After so much time I couldn’t believe it!
        – Motrin: for me, ibuprofen is also the best painkiller. I tried Lyrica, amitriptiline, and lots of others drugs that didn’t work. But remember: if your lymphatic and circulatory systes are not ok (like mine that were congested – I even developed pelvic varicocele) and the energy is blocked, the medicines do not work because their components do not reach the organs. I am scientist and didn’t believe in this theory, but I am changing my idea about it!
        – you didn’t mention a fundamental factor: the diet! What do you eat? What do you drink? How much water do you drink? I found amazing results after changing my diet. I can tell you if you like. And forget vitamins, integrators, etc etc, especially if are not first “detoxicated” in your circulatory systems (“alcalinization” of the body).

  8. Finally, the best option against neuropathic pain is neuromodulation. Did you try PTNS (posterior tibial nerve stimulation)? It’s a wonderful option and has no side effects. Instead of stimulating the afferent fibers of the pudendal nerve (sacral neuromodulation), the PTNS works with the efferents fibers. 10 times and you will see some effects! In Switzerland there is also a new technique applied by dr Marc Possover in Zurich (Hirslanden Klinik) called LANN: it is a direct electrostimulation of the pelvic nerves (implant by laparoscopy!), most probably better the having a stuff implanted in the sacral zone… Have a look at the website http://www.possover.com!

  9. PS: the only thing I still didn’t try is a myorelaxant (drugs or Botox). I read lots of histories of people who had no or few benefits. My shiatsu therapist says that myorelaxant drugs are useless because, after their effect has finished, the situation returns like before. She says that postural changes, massages, therapy and relaxing techniques to avoid/lower stress are much better solutions. About Botox, my former pelvic floor therapist who studied in London (by the school of Renzo Molinari) told me that it can lead to incontinence (if used in both sides) or more severe problems due to the unbalance of the muscles sustaining the pelvic floor (if used only in one side).

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