Last year I turned sixty. Sixty feels like a watershed, a milestone, and you know you are closer to your end than your beginning. But last year was the year I felt I made a breakthrough in understanding the possible cause of the pain I have struggled with for at least fifty of those years.
I am a wife, a mother of two adult children and a grandmother of five beautiful kids. I have worked, studied, run a business, raised a family, cared for, and said goodbye to, my parents. I love to garden, cook, eat, travel, swim, walk, and renovate houses. And I have nearly always had a pain in my stomach, felt like I needed to go to the toilet, had a backache, and been itchy, burning and uncomfortable in my vulva, as well as having intermittent bouts of diahorrea, digestive upsets, and sometimes an overwhelming fatigue that felt like jet lag.
Those symptoms came and went over the years, not all of them occurring at the same time (thank goodness!) and episodes were spaced far enough apart that I didn’t really connect them all. So I had lots of tests for individual symptoms over the years, usually with no results to explain anything. I have had my appendix out (the pain came back), a hysterectomy ( it fixed one problem and made others worse), and more x-rays, scans, and blood tests than I can remember.
About 12 years ago, one symptom overtook all the others in severity, and the impact it had on my life. The vulval pain got so bad that I could no longer be sexually intimate with my husband. If you have vulvodynia, you understand the pain and mental anguish, I don’t need to describe it.
My search for answers took up the next eight years, until I was finally referred to a wonderful gynaecologist who knew exactly what was causing the pain, and what to do about it. So I had some surgery (most people don’t need surgery, in case you are getting scared about this) which made a huge improvement for me, and I have learned to use biofeedback, breathing control, relaxation, and exercises to help me manage it. (And, yes, I can now be intimate with my husband again). I also remained on Endep to help with the lingering anxiety caused, I believe, by all the years of pain and not knowing what was wrong with me.
About a year ago, I began to suffer from cramps in my leg muscles, and to feel very tired quite often. And the bladder pain and urgency was worsening. I often felt it was difficult to concentrate, and began to need to sleep in the afternoon. I put this down to getting older! I also noticed odd tingling sensations in my toes. Then I started to get strange blisters in my mouth and throat. My dentist and doctor were both puzzled, and eventually I was referred to an oral medicine specialist, who diagnosed them as mucoceles, which are caused by saliva glands being blocked. She also remarked that I had a condition called “geographic tongue”, which is an odd kind of blotchy pattern that comes and goes on my tongue. It is sometimes quite painful. When I mentioned my vulvodynia in my patient history form, the doctor commented on a condition called “burning mouth syndrome”, saying she believed it was a similar type of condition. I asked if the Endep, which is known for causing dry mouth, could in some way be causing the mucoceles, and the specialist agreed it could possibly, and the only way I could find out was to try and stop taking them, and see if it made a difference. (Note that if you are on this type of medication you should not stop taking it suddenly, and you should consult your doctor about how to gradually lessen the dose).
I was quite keen to get off the Endep, not only to see if my mouth would get better, but also because I had put on weight, and I felt maybe this was a side effect too. In fact, I was so keen to lose weight that I stopped eating bread and pasta, substituting more vegetables, fruit and nuts. I had already given up tea, coffee, alcohol and chocolate to see if that would help the bladder pain, and it did make quite a big improvement. (I have also found that citrus, tomatoes, cranberry juice and carbonated mineral water cause the bladder discomfort to get worse.) I started to feel better, and to have more energy, and was able to start taking longer walks again, and swim regularly. I thought that this was due to being off the Endep rather than the changes in my diet.
One day, after discussing my oral symptoms with my chiropractor, as part of a general health check, he asked if I had ever been tested for coeliac. He is himself coeliac, and so more aware than most about all of the possible symptoms, and also has the same oral symptoms that I do. He commented that the symptoms are more common in coeliacs than the general population. I didn’t think much about it until a few days later when I indulged in a few slices of fresh bread, and immediately became uncomfortable in my stomach. The next day I was violently ill with dreadful stomach cramps and diahorrea. I noticed a flare up in the mucoceles, and the geographic tongue, and the vulval and bladder pain!
This was a lightbulb moment for me, and I started reading everything I could find about coeliac, bladder pain and vulvodynia, and I decided I would keep a diary of everything I ate and drank, and my various symptoms and pain. Then I did a two week trial of going completely gluten free and I started to feel so much better again. After the two weeks, I visited my GP and told her all I had been doing. She looked at me for a minute and said, “well, yes, I think you do need to be tested for coeliac.” The downside was that because I had gone gluten free, I needed to start eating it again for 4 weeks in order for the blood tests to be accurate. That was a very long four weeks, and by the end of it I felt terrible, like I had the flu and jet lag at the same time, and my bladder was incredibly painful.
I was almost relieved when the test results showed that I did have the coeliac gene, and gluten antibodies in my blood. I am still waiting to see a gastroenterologist, and have some more tests, but most of all I am happy to have found out why I have had all these stomach problems, muscle aches, oral problems and fatigue.
My experiments with my diet so far have found that what I eat and drink has a very significant impact on my bladder and vulval pain as well. I know it is complicated, and I am not a medical person, but I really hope that further research might be done to see whether coeliac is a contributing factor to vulvodynia and bladder pain syndrome. At the very least, I hope that when women present to their doctors with vulval pain and bladder pain syndrome, that they might be tested for coeliac. From my own experience, I strongly believe there is a connection. The reason I have wanted to write my personal journey is in the hope that it might be of some help to other women. The pain and the search for answers can seem overwhelming, but I want to encourage you not to give up in your journey towards better health.
Now, sixty feels like it might be a new beginning. I am exploring gluten free food and experimenting with recipes, about to embark on our seventh house renovation, and am planning my new garden. I have more energy for my grandchildren, we are looking forward to more travel, and for the first time in decades, I don’t feel aware of my bladder and vulva all the time.
I am so grateful for all of the help I have had from my wonderful doctors and health professionals. Their knowledge, encouragement and willingness to listen to me has helped so much. And to my wonderful, patient and long-suffering husband, who has walked this journey with me for so many years, thank you.