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Doing IT All Again

Category: Impact on Quality of Life and Impact on Relationships.

The pain has just become part of my life now. It has been quite a battle to get here. I turn 40 in a few days. I’m not in paid employment and haven’t been for 3 years (too many ‘sick days’, not surprisingly, causes issues in paid employment). I am married but we do not have any children. I constantly struggle with pain but was willing to accept it now as part of me. Even though I have constant period pain when I’m not menstruating, when I am menstruating, you might find me dripping with sweat, bent over, sitting on the toilet (trying to hold myself up and not pass out) with my head in a bucket. The pain is so excruciating that I vomit and have diarrhoea at the same time constantly for an hour long. The colour of my skin is blue during these hour-long episodes. My periods have always been heavy and painful. I have seen two different gynaecologists. Everything I could possibly try, I did it (meds, injections, diet, exercise, etc). I have also been put on every different antidepressant and anti-anxiety medication there is. None have helped. I have had two laparoscopies. One when I was 16 years of age – no endometriosis found, however, one cyst drained. The second at the age of 35 – a small amount of endometriosis found and removed, two cysts surgically removed and a Mirena inserted. The Mirena was removed 5 months after it was inserted because I didn’t stop bleeding for the 5 months and was (as per usual) in constant pain. I now also deal with nerve damage where the cysts were removed and feel raw pain to the one side where they were removed. I attended a Pain Clinic (after the Mirena was removed), I was asked by the doctor, “So tell me, right from the beginning about your pain?”. When I mentioned that a small amount of endometriosis was removed after the second laparoscopy, I was stopped in my tracks by the doctor and told, “Sometimes in life we make things up because we want answers.” At this point I was in tears, my husband was with me and confirmed that the gynaecologist had phoned him when I was out of surgery and said she had removed endo. The doctor was still adamant I was ‘making things up’. My husband and I started to believe him and left the Pain Clinic thinking, ‘Wow, did we really make that up just because we wanted answers?!’ My husband and I should never have doubted ourselves. I had been referred by a different gynaecologist (different to the one that preformed both laparoscopies) to the Pain Clinic. There was no mention of any endo removal in this gynaecologist’s notes, only notes on the nerve damage (which she was interested in) occurring with the removal of the two cysts. I never returned to that doctor at the Pain Clinic (I never returned to the Pain Clinic at all). I did speak through my gynaecologist to that doctor, I sent him copies of my surgical invoices stating ‘endo removal’. He never apologised for telling me I was making things up. I was told by the gynaecologist that he was using the “tough love method” and informed that the doctor had said, ‘Okay, so the endo has been removed and she’s [me] still in pain, so it’s not endo that is the cause of her pain, she just has painful periods.’ Which seems like a fair comment, I guess (?) My pain can come in short waves, very close together, it feels as though someone is wringing out my insides (what, I can only imagine, strong labour contractions would be like). I feel a raw, stinging sensation – like someone is cutting the lining off my insides. I also feel a heavy, gravitational pull of my insides which is constantly painful, along with what I think is the ‘normal’ period cramps. Not long after the visit to the Pain Clinic, I became overwhelmed with the realisation that no doctor or gynaecologist could help me. I was on medication – Provera, Gabapentin, Amitriptyline and Nortriptyline. One afternoon when my husband wasn’t home, I took a large amount of Nortriptyline. I was so tired of struggling every day (and still am). I gave up (and in many ways I still want to – ‘fixing’ the pain, that is). My husband returned home, I was taken to A&E in an ambulance. I am very ashamed now of the point I had reached, when simply my acceptance of the pain and therefore, avoidance of any more medical treatment has meant a saner life for me. I felt it was extremely difficult having the pressure from my husband and mother to ‘get fixed’ also. I have taken myself off all medication, except for ibuprofen. I stopped my visits to the gynaecologist. In some way, it felt good to be able to control something. Seeing the gynaecologist (I have now realised) was doing me more harm than good – each time I saw her she would put me on a different medication, each time it was unsuccessful. Before seeing her, I would get this glimmer of hope that maybe, just maybe, this time will be different. That small glimmer of hope turned into overwhelming disappointment and self-loathing every time. Since my last laparoscopy at the age of 35, I hadn’t had a smear test. That’s how good/bad my coping mechanism had become – avoiding everything medical. Over the last few months I have noticed new developments with my constant pain – I sometimes bleed red blood after urination, bowel movements and sex. I do usually always bleed brown blood but the red blood is certainly a new development. I have also noticed more pain after using the toilet than usual (this can be at any time of my cycle – my cycle has always been all over the place anyway). I plucked up enough courage to book a smear test. I was amazed that the test came back as normal. I was in a lot more pain than usual after the smear. During the smear the nurse informed me that I was raw and had mucus on one side (the same side as my nerve damage/cyst removal and the same side which has been particularly sore since the second laparoscopy). She also noticed ‘something abnormal’ looking on that side. With the normal result of the smear the nurse made an appointment for me to see my doctor. You can guarantee I would have avoided this appointment had it not been for the nurse’s persuasion. My doctor had a look and believes the ‘something abnormal’ is just another cyst. She is making an appointment for me with another gynaecologist (different from the other two I have seen previously). She is also testing me for PCOS (which I have always tested negative to in the past) and mentioned a male specialist in endo from Christchurch that she had heard speaking at a conference. That is how I discovered this website – Googling, ‘male specialist in endometriosis from Christchurch’. I am unsure whether my diet/pain management is correct. Over the years that I have avoided medical treatment and/or advice, I have instead tried to listen to my own body. I eat 1 meal a day as I find 3 meals per day leads to heavier bleeding and more pain. I am completely gluten free (gluten seems to cause more pain also). I don’t drink coffee or tea and have removed sugar from my diet. I drink a lot of water throughout the day and use a wheat bag every evening. I wouldn’t say any of these changes over the years has helped with my pain immensely but perhaps a little. I am lucky enough to have Health Insurance, disappointed I have never heard of the ENZ website before and that endo specialists in NZ seem to be located from Christchurch upwards. I am afraid, I am anxious, I am exhausted, I am in pain, I am waiting to hear confirmation of my appointment with the next gynaecologist. Here I, very reluctantly, go again

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