My story: my experience of longer-term PGP
I have longer-term PGP and this is my story. As a reader, I know that I always love to hear more of women who have PGP in the longer term and suspect that I am not alone in this.
My name is Sarah Twomey and I live in Clonakilty in the south west of Ireland. My husband, Darren and I married in 2003, and about 9 months later, I realised I was pregnant! We now have three beautiful children; Jim, 9, Rachel, 5, and Lara, 2. I had SPD (or PGP as it is now known) at 28 weeks into my first pregnancy in 2004. It came on fast and furious and I was on crutches and severely debilitated.
My obstetrician was very dismissive, and I was led to believe that I just needed to “get on with it” and that all would be fine once I had the baby. He even intimated that I was lucky I didn’t live in the 1960s or they would have performed a symphisiotomy! (you may have heard of this shameful procedure that was performed in this country some time ago). I questioned him about a C-Section and I was told that there was no reason why I couldn’t have a natural birth. I naively went along with it, caught up in the whole idea that a “natural” birth was the better option. As it turned out, the birth was far from “natural”.
I ended up having third degree tearing and had to be put in stirrups for over an hour while the obstetrician stitched the wounds. This, I am convinced, did irreparable damage to my pelvis. There was no elevator in the hospital, so I had to stay downstairs in the pre-natal ward for a week as I couldn’t walk. The midwives were, for the most part, very unsympathetic to my situation, and this compounded the matter even more for me. However, I slowly made improvements with the aid of a gifted physiotherapist who, unfortunately, moved to Holland shortly after. One night a year after the birth, I was dancing (I was never much of a dancer, so, suffice it to say that I wasn’t on the dance floor for long!), and the next day I couldn’t walk. My legs were shaking uncontrollably and my GP organised for me to have an MRI, on suspicion that it was something neurological. Thankfully, it wasn’t, but when I went to get those results, the neurologist told me that a lot of people had “back problems” and I had to just “get on with it” (those words again!). I plodded along for some time, wavering between weeks of severe pain to weeks of managing.
I then became pregnant with Rachel in 2007, and the PGP set in earlier this time. However, at least I now had the knowledge to ask for a C-Section. It was surprising that I really had to fight my case for a section. The birth and whole experience, thanks to the section, were much more positive and I went for physiotherapy again. I didn’t feel any great benefit from it. I found standing very uncomfortable and if there was a queue in a shop, I would have to turn around and leave. Sitting on hard chairs remained a problem, as did walking or any kind of exercise that I tried. I used to be a good swimmer before my first baby, but I found that after swimming I would be limping with the pain.
It was all very frustrating. With two young children at home, I simply couldn’t be debilitated. I went to chiropractors, osteopaths, cranio-sacral therapists and, quite frankly, to anyone who was willing to see me! When I started these treatments, I was so hopeful that they could do something for the pelvis. I was convinced that they could help me. And, indeed, they all did provide some short-term alleviation of symptoms, but nothing long-term.
In 2010, I had my third child, Lara, but this time I was more prepared. We arranged for an au pair to come live with us and that was definitely a help, as I was still working. After little Lara was born, I went straight for physiotherapy again. However, I didn’t find this physiotherapist of any benefit to me. In fact, I was crippled after the sessions with her, and, much as I tried all the exercises that I was given, I found them to be counter-productive. They made my symptoms flare up even more. I did a lot of research myself into finding a physiotherapist who knew about the pelvis, and my probing led to a visit to a Sports Consultant, as I couldn’t find a physiotherapist to help. He ran a series of tests, one of which showed up femeroacetabular impingement in the hip. He also saw the pubic bone itself as misaligned. I had several cortisone injections over a period of 18 months as well as seeing a physiotherapist who he had recommended. The injections were into the hip, the pubic symphisis and the sacroiliac joint. They provided good short term relief to those areas. The physiotherapist was an hour’s drive away. I went to see him regularly, and followed his exercise regime to the letter, but, again, the symptoms flared up even more. I was very debilitated, and the physiotherapist suggested I go back to the Sports Consultant.
The Sports Consultant, to my dismay, said that there was nothing left to do but to operate on the pubic bone and fuse it. A quick Google and it was clear that this operation was to be approached with the utmost caution. I decided against it. Since then, I have been back to the neurologist, who, now that it is so many years later, and he can see that I am limping and in excruciating pain, seems to have more compassion than he had previously. He ran another MRI to the brain to again rule out any neurological condition. I am waiting to return to that appointment. I am certain, however, that my condition is PGP that has been exacerbated due to lack of proper treatment at the proper time.
My GP has recently recommended a local physiotherapist who is Italian and uses different methods than those I had been to previously. Her approach is very gentle. She manipulates the pelvis in a non-invasive way and I am following a regime of exercises that are manageable. I am hoping that one day, I will be able to go for a walk on the beach, to go swimming, to cook a dinner (without pain), to look forward to going somewhere, and to not have to watch for soft seats in restaurants! Two weeks ago, I started on the drug Lyrica. Last week, I felt a bit freer in my movements, though this week that no longer seems to be the case. The physiotherapist and the GP are of the opinion that the drugs are necessary to loosen things up. Foolishly, I had thought previously that if I took these drugs, it would be an admission of the permanency of my situation. I felt that it was a kind of “last chance saloon”! However, I now see that if I am to benefit from the physiotherapy sessions, then I need to be somewhat more ‘free’ in my movements.
In the meantime, everyday tasks continue to be difficult. My husband works away during the week and I am still working (I am a teacher). I don’t know what I would do without the au pair! The future is uncertain, but I now see the importance of taking one day at a time. Thanks to all for reading this, Sarah.
Thank you for sharing your experiences, Sarah, we hope you continue to make progress towards a complete recovery. It is encouraging to know that for many cases longer-term PGP can be treated effectively in just the same way as for those whose PGP is newly diagnosed and addressed. In both cases it is manual therapy that can provide effective treatment for PGP and most people find that the symptoms respond well to treatment, once they have found a suitable healthcare professional. This person should be a physiotherapist, an osteopath or a chiropractor and should know what PGP is and have treated it before. Unfortunately, it can take time and persistance to find the right manual therapist.