Hello Tribe! Apologies it has been so long but life gets in the way of the best intentions doesn’t it? I’m putting fingers to keyboard today to keep you on top of the current situation I am facing. These are some dark days right now and I feel like I am trying to swim in an uphill current. I feel overwhelmed and a little powerless.
Some of you will know that I have suffered with my medical history in the past. Many of you will remember reading my post detailing when I went received an abnormal smear result. So it is not uncommon for me to be overly sensitive about my ‘downstairs plumbing’, which has been malfunctioning somewhat lately.
Sorry (not sorry) for the male species who have decided to crack on and read this, but I never shy away from writing about health matters when I think they might help others so… deal with it.
What’s up Doc?
Lately I have suffered from several bouts of thrush and two suspected urine infections. This is something that over the years I have just accepted as being susceptible to. I also suffer with pelvic pain and have done for as long as I can remember. With this comes terrible period pains and bleeding in-between periods. I also have a separate diagnosis of IBS and Chronic Fatigue Syndrome. What a wonderful concoction of ailments to be dealing with eh?
Currently my pelvic pain and lower back pain are unbearable. There are times I will stand up and it feels like I have torn something in my pelvis. The pain is so intense it takes my breath away. The severity of my pelvic pain is different on a daily basis but it is always present. My lower back pain is currently preventing me from sleeping at night despite the fact I am constantly exhausted.
A few weeks ago my doctor referred me to have a scan to make sure I had no ovarian cysts. I’m pleased to report there are none. In fact, where I was previously told my ovaries were abnormally small, the sonographer told me my ovaries were actually “jumping out” at her. She said she could see lots of eggs inside. This made me happy because it is no secret that my one fear in life has always been that I won’t be able to have children! I suspect my year off of the contraceptive pill may have helped with that.
With everything looking good it was back to the doctor who decided I need to see a specialist. The closest appointment they have is July 27th and initially I was ok to wait for this.
Last week after three concurrent days of intense pain I went back to the GP to ask for stronger painkillers to see me through. We spent some time discussing some more of my symptoms and noted that my urine sample showed the threat of another infection. The doctor said he thought I might have Endometriosis and to discuss this with the gynaecologist when the time came. Time for some research!
What is Endometriosis?
Endometriosis is a common inflammatory disease which affects an estimated 176 million girls and women worldwide. Endometriosis occurs when tissue similar to the lining of the uterus is found in places outside of the uterus. The cause is unknown but it seems to run in families and so there is a possible strong link to it being heriditry. Endometriosis has elements of a pain syndrome often referred to as central neurological sensitisation and this can overlap with other conditions and often result in a diagnosis of those – one of which is Irritable Bowel Syndrome (IBS)
- Pain with periods (dysmenorrhoea): I have had painful periods since I started puberty. Knowing that all women suffer differently, I have always just taken it on the chin and accepted that I get it worse.
- Bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind (sometimes diagnosed as Irritable Bowel Syndrome): I was diagnosed with IBS several years ago because I have suffered for years with the above symptoms and no doctor could pinpoint a medical reason.
- Painful intercourse (dyspareunia): I went through this with both of my longterm relationships at some stage and we couldn’t work out why. I thought it was all a mental concept in my head and so it comforting to know it wasn’t!
- Sub-fertility or infertility – I can’t speak for this one but I know there are a lot of fertility issues for women who have this and so my worst fears are in full attack mode at the moment.
- Tiredness and low energy – I can trace my tiredness and low energy all the way back to my teenage years. My friends will tell you that I can fall asleep at the drop of hat. I have always complained about low energy and tiredness and so when the doctor couldn’t find a medical reason they assigned me with the ‘Chronic Fatigue’ label. I push myself through this on a daily basis because I have to. I refuse to be somebody who sits back and lets low energy engulf them but it really is a struggle. When I think back to the bouts of depression I went through and how I just couldn’t get myself out of bed, it makes sense to me now that those two things were working together to create my comatose state.
- Pain in other places such as the lower back – Just last year I had cortisone shots in my lower back… Goodness me it just all makes sense now, especially as the pain hasn’t gone.
- Pain at other times e.g. with ovulation or intermittently throughout the month – I always feel ovulation pain, it’s almost like going through another period!
- Premenstrual syndrome (PMS): This might make you feel moody, emotional or irritable: I am the queen of emotional and anybody who knows me will tell you that! I will often cry at the drop of a hat and sometimes for no reason. I can go from happy to sad in a nanosecond, I feel everything so deeply and it’s exhausting. A previous partner once referred to my ever-changing moods as being on a rollercoaster ride because he “never knew which Sandra he was coming home to”. It’s nice to know that there is a reason for it all because my emotions are certainly erratic at times. I thank each and everyone of my friends and family for sticking with me – It cannot be easy!
- Abnormal menstrual bleeding: Ever since my abnormal smear I freak out every time I have abnormal cycle bleeding. At least now I know it is probably not as sinister and don’t need to panic as much.
- Bladder troubles like interstitial cystitis (IC): I have never had a strong bladder. As mentioned previously I suffer a lot with what I believed to be urine infections/cystitis. Now I know it is just part and parcel of this disease.
Internationally there is a diagnostic delay of 8+ years from the first present symptom. I can see how easy it would be to misdiagnose this disease when one don’t have all symptoms present.
Now here is the scary part. Endometriosis can only be diagnosed by viewing the pelvic cavity during laparoscopy (key hole surgery) whereby any Endometriosis is also removed. One could wake up with no ovaries if they have agreed to removing all severe instances of Endometriosis.
Now that my gut instinct is telling me we have found the underlying cause I am not prepared to wait. I am going to be calling around speacialists first thing tomorrow morning in the hopes of being seen asap. It has never been in my nature to rest on my laurels about these things.
I won’t be giving up my “get up and go” attitude anytime soon. I’m a fighter and a survivor. There has been many twists and turns in my life and I am still standing strong, but I am only human too. I need to break down now and again. At the moment it is all I can do to get through my working days. I have a select few who I rely on during times of crisis in my life. They are people who feel like home, my comfort blanket in times of need. Please don’t take it personally if I am rubbish at keeping in touch right now. I don’t have the energy for small talk or chit-chat. It is all I can do to focus on my own life. Please bear with me.
That is where I am up to right now. I will of course keep you all updated but for now, please keep me in your thoughts.