Patient journeys from women with endometriosis
Lyndsey Hogg has given her journey on the Endometriosis UK website.
Here is an anonymous patient journey:
In February 2013, I had a laparoscopy and was diagnosed with endometriosis. I had surgical treatment and the Mirena coil fitted, which was expected to make a material improvement to the symptoms I’d been experiencing. Unfortunately, the symptoms persisted and then escalated in March 2014 when a subsequent laparoscopy confirmed that the endo had spread and I had a ruptured ovarian cyst. I was then given further surgical treatment and 3 month injection of GnRH agonists, which unfortunately made me feel worse so I did not continue with this treatment. I felt like a shadow of my former self, found the diagnosis and symptoms difficult to accept and was becoming increasingly anxious about the future.
My gynaecologist advised that there wasn’t much more that could be done from a medical perspective and we would just need to wait and see what happened. At this point, I really realised that I had to take ownership for educating myself and improving my quality of life. I found out about the pelvic pain clinic via the Endo UK website and asked my GP to refer me. I met with a Clinical Psychologist who educated me in respect of the pain volume control in the mind, which governs both the intensity and duration of the sensation of pain. In addition, we discussed the difference between primary and secondary pain as essentially you can be in pain but don’t need to suffer. We also worked through my need to ‘control’ the pain and I came to realise that endo isn’t something that can be ‘ controlled’ but it can be ‘managed’. I have now developed a pain management plan involving mindfulness meditation, being disciplined about getting enough sleep, eating nutritiously, acupuncture, pacing myself and having a good laugh by looking for the humour in situations. Ultimately, I have come to realise that I massively underestimated the effort and length of time it would take to get to a position where I would feel like I’ve got my life back but now I’m there I’m determined to continue to keep taking care of myself whilst accepting that there will still be bad days but being mindful that they will pass.
Here is another, anonymous, journey:
My journey from getting a diagnosis to managing my endometriosis has been lengthy and at times unbelievably stressful. After suffering extreme exhaustion, very heavy bleeding at each period, along with pain that was not necessarily dictated by my menstrual cycle I was diagnosed in 2005 with endometriosis. At the time I was advised to try taking the Pill continuously, in an effort to control it – which certainly seemed to work. However after stopping the Pill in order to have my daughter, my endometriosis seemed to come back with a vengeance. So on top of sleepless nights, returning to work full time, supporting my husband who had returned to full time education I was in constant pain. I went back onto the Pill (again taken continuously), had a Coil fitted and virtually lived on a combination of codeine, ibuprofen and Amitriptyline. If I was taking all of this medication yet still suffering an immense amount of pain, I often wondered what my life would be like and the level of pain I would be in without these!
Since my diagnosis I have had times that I have been “well” but many more that I have not. I desperately needed to be able to have some sort of quality of life, however couldn’t imagine how this was going to happen.
For me the first of two crucial turning points in becoming ‘better” came at the end of 2011 with the option of trying Zoladex (putting the body into a false menopause) and the second was being offered the opportunity to see a Psychologist whose primary work was with chronic pain patients. Within a couple of months the medication had started to work and physically I saw a massive improvement in my health, which in turn boosted my belief it was possible for me to achieve a ‘good quality of life’ and with the help of the psychologist I have been able to learn and understand more about the pain cycle and gain a better perspective on how I can manage it. I am now at a point that my lifestyle has improved immensely and I am mostly pain free!
I know that there are many options out there – however for me it has certainly been a combination of medication and finding the right support.