Hi, I hope all of you are having a great Friday, or as good as it can be xx
Just wanted to let those of you whom are starting your journey with endometriosis that it all does go somewhere and it is worth all that effort!
I am four months post lap and have my first month almost completely pain / symptom free since I started them, yay, here's to this now being my future for at least a while.
Here's my story (it's long, as are most of ours); I started my periods age 11, they've always been painful, crampy, really heavy with bloating, headaches, dizziness. Everyone ignored me. At 18 I stared uni so thought I'll be more in control of my cycles if I go on the pill, so I saw a doc whom put me on microgynon, which worked brilliantly for about 6 years. Then all the symptoms came back, my current doc said 4 monthly back to back may work, so we trialled it for a year, it worked well. I continued with that for another 4 years - leads me to being about 28. During that time I managed to push for an ultrasound scan for PCOS, as the cramping was occasionally still there, along with the weight gain, hair growth, deep voice, plus it's in my family. They diagnosed possible PCOS but was ruled out by my GP after coming off hormones and having blood tests. At 30 I decided to come off the pill altogether as all my symptoms were back even on the pill, so it didn't seem to be working. After coming off it, I was okay for about a year. Then bam, all my symptoms and more came along; the pain during ovulation, lower back pain, more bloating, horrendous headaches, really heavy bleeding (pad and tampon every hour), deep pain during sex, regular thrush and a sharp pain during sex, spotting after sex, and cramping after. I didn't know what was going on but I was adamant that it wasn't normal, the GP wouldn't pay attention.
I coped for three years then went to see a different doctor with all my notes of what went on - June 2017. She was really kind, and helpful, we explored ideas of what it could be (endo, pcos, fibroids), she decided initially on a cervical swab - results were inconclusive, on visual examination she found cervical ectropion (sensitive cells from the top of the cervix appear further down) this explained the sharp pain and spotting, plus thrush. She said it's not something people look for or think about. I was referred under NHS to a gynae specialist - basically put on the waiting list - updated - this took until after my first lap 4 month follow up for the initial appointment to come through - so about 8ish months.
When I looked into it all a bit more after I'd spoke to my GP I found my work has health insurance so I chose an endo, heavy period, fertility private specialist through my work insurance. I saw him a month later July 2017 - we decided on treating the cervical ectropion and exploring the other symptoms with an ultrasounds (including transvaginal). Those came back with a 2cm fibroid that he'd decided wasn't a problem. He wanted to do a diagnositic lap with hysteroscopy and biopsies as he was convinced it must be endo. I really like that he didn't push for hormones etc, just wanted to get to the base of the problem. My specialist performed my op November 2017, and found endo all over my bladder, uterus and a bit on my bowel, it was all over my ligaments in there too, and sticking stuff together. He removed and unstuck everything apart from the bowel one as that needed a specialist. The op was a day case, really quick and brilliant experience as far as ops go. He predicted a 50% reduction in symptoms.
At my follow up 4 months later we discussed the idea of removing the remaining bit on the bowel; as I was still having some symptoms around the bowel area, plus cramping and deep pain when my bowels are full. I saw the colorectal specialist he works with. They both agreed to the operation. This went ahead July (2018) just gone, it was an overnight case, and recovery took a lot longer; I was signed off for 5 weeks as opposed to the two with the previous op.
I have developed lower back pain during that time which means I now see a physio and a movement specialist for, they have both mentioned that the ops and the endo itself are the cause of the back pain; the ops on the core and the endo affecting all the ligaments inside that hold stuff into the pelvic bone – this results in a weaker core and the lower back compensates. We are working on improving my core through focused exercise and mobilising my lower spine to help future recovery. My specialist was expecting a 90% reduction in symptoms, and hopefully no endo problems that he needs to be consulted about for 2 years ish. I know it’s just a prediction.
So far all my endo symptoms have reduce dramatically. It's now just period cramping which I can manage with yoga, aromatherapy and meditation, sometimes the odd painkiller. I have no problems in-between periods, no pain during sex, no random spotting. It's amazing, I have my life back! Periods are lighter, well probably what they should be now. I'm back to my polefitness, yoga, gymnastics rings, with no problems. I know it won't be forever but at least I can get on with stuff for at least a year, then we shall see. I'm not planning on taking any more hormones; I definitely think the laps are the way forward.
I am now almost 35 and realise I may not have much chance of having children due to my age even though I’ve been given the all clear but this has given me a different outlook on life; we can’t spend all out time and energy wanting what sometimes just isn’t the path we’re on. I’m not religious but I am spiritual; there are some paths that we are meant to take and some we can choose; I accept where some paths lead. I live each day as if it were precious, I appreciate those that are with me and help me through stuff, those that don’t put the time into knowing me I don’t give them the time either – time is precious – let’s not waste it. I love my partner and I know he loves me. I focus on the now, and what happens is just it, I can’t change it, endo hasn’t chosen me, it’s just there, so it’s not going to control me, but it has made me who I am and that’s okay, I’m okay
I have just had my 4 months follow up appointment with my specialist - and it's great news; based on my symptoms now and my recovery from both my ops, he doesn't expect to need to see me again for 5 years! My symptoms have decreased by 90% which is 40% more than he expected therefore I seem to be managing fine. Obviously I now know what I have and should it get worse I know what to do / whom to see / what the process is. I know that symptoms can worsen quickly and the amount of time with less symptoms isn't certain - but just knowing I'll be okay for a while really helps
Hindsight - would I have been more confident and pushed for a diagnosis sooner when younger rather than suffering - yes definitely. Knowing what I could have done and how much I suffered thinking it's normal or feeling I'm being ignored; I definitely know pushing for a diagnostic lap to have confirmed diagnosis at a younger age could have shaped my treatment, my view on life, my confidence in my own body, and my own self confidence.
I hope this is an inspiration to some of you whom feel this is all a scary daunting thing, it isn’t and everyone has their own story; but we can learn so much from each other.
Thanks to all those on here who have helped me through the last op and recovery xx