Llinos’s Story / Stori Llinos

 

llinosLlinos Blackwell, aged 39, from Rhyl, North Wales.

The end of my story is a happy one.  That is, hoping that this is the end of a ten-year-long saga. How healthy I feel today is all thanks to the amazing work and support of FTWW, the ladies who run it having ‘found’ me in another endo group and inviting me to join FTWW in its infancy (fewer than 30 members when I joined in March 2015 –  over 270 today).

The saga actually starts as far back as my first period at eleven years old. I suffered years of extremely heavy and painful periods along with painful bowel movements during periods. I always thought this was normal. The only person I talked to about this was my mum, who always told me that these things were normal as she too had these issues. In my twenties my periods gradually slowed to a complete stop but I then started experiencing these period-type pains throughout the month along with back and leg pain and painful intercourse.

I eventually talked to my GP about this in 2006. He signed me off work for 5 weeks with ‘malaise’, feeling low, and offered me anti-depressants, which I refused. I knew that my constant pain wasn’t normal, but had no idea what was wrong. I was referred to a gynaecologist due to my lack of periods. Internal examinations were so traumatic that my GP used to prescribe me sedatives to get me through the appointments. Still no mention was made of endometriosis.

By the time someone mentioned endometriosis, I’d seen four different clinicians. I’d never heard of endo and had to ask for it to be written down.

In my first appointment with a gynaecologist I’d previously seen, but hadn’t mentioned endo, he told me that if it was endo, I had two choices – to have children or to have a hysterectomy. “Use it, or lose it!” Neither option sounded right to me, and I’m glad to say that I agreed to neither. I had laparoscopies, with diathermy (burning) in 2009 and again in 2012. I assumed that I was receiving the correct and best treatment. Why would I question the person I assumed was the expert? I knew, however, that diathermy wasn’t a cure and had resigned myself to be in a cycle of having surgery every three years.

Around September 2014 the pain gradually started returning, so I started posting in some endo support groups on Facebook. Many of the groups made me question myself as to whether the pain was really as bad as it felt. There seemed to be a lot of competition amongst the ladies about whose pain was worst, who had the highest stage of endo, and so on – but no real solutions were offered. Thank goodness the FTWW ladies ‘rescued’ me and helped me to understand my symptoms.

FTWW is an absolute lifesaver. The support from all of the ladies in the Facebook group is amazing, practical, realistic and non-competitive. No topic is off limits.

It is only because of FTWW that I found out that excision – cutting out the disease, and not diathermy, was the gold-standard treatment for endo. It is only because of FTWW that I found out about BSGE Endometriosis Centres. It is only because of FTWW that I found out about the referral pathway for North Wales ladies to Arrowe Park Hospital. It is only because of FTWW that I was able to give my GP the facts about this pathway and to ask for a referral. It is only because of FTWW that I was referred to the specialist centre, had excision surgery and now have my life back! It is only because of FTWW that my husband and everyone around me have their wife, sister, aunty, friend, and colleague back!

 

Llinos Blackwell 39 oed o Rhyl Gogledd Cymru.

Mae diwedd fy stori yn un hapus. Hynny yw, gyda gobaith, fod hwn yn ddiwedd ar gyfnod o 10 mlynedd. Mae’r ffaith fy mod yn teimlo mor iach heddiw, yn diolch i’r gwaith anhygoel a chefnogaeth gan FTWW. Cafodd y merched sy’n rhedeg FTWW ‘hyd’ i mi mewn grŵp endo arall a chefais wahoddiad i ymuno a FTWW yn y dyddiau cynnar, gyda llai na 30 o aelodau, pan wnes i ymuno ym Mawrth 2015 – dros 270 yn y grŵp heddiw.

Cychwynnodd y saga mor bell yn nol a fy mislif cyntaf yn 11 oed. Roeddwn yn dioddef o waedlyd trwm iawn a phoenau mislif gyda phoenau yn y coluddyn yn ystod fy mislif. Roeddwn yn meddwl fod hyn yn naturiol. Yr unig berson wnes i drafod hyn gydag oedd fy mam, a dyweddodd hi fod y pethau yma yn naturiol a’i bod hi yn dioddef gyda’r un problemau. Yn fy 20iau fe wnaeth fy mislif leihau yn araf ag yna stopio, yna fe wnes i ddechrau cael poenau fel rhai mislif ond drwy gydol y mis gyda phoenau cefn ag yn fy nghoesau ynghyd a phoen wrth gael rhyw.

Es i weld y meddyg teulu yn 2006 oherwydd hyn. Cefais nodyn doctor am gyfnod o 5 wythnos gydag anhwylder, teimlo’n isel a chynnig tabledi gwrthiselydd, ond fe wnes i eu gwrthod. Roeddwn yn gwybod fod y boen roeddwn yn ei ddioddef ddim yn normal, ond nid oeddwn yn gwybod be oedd yn bod. Cefais fy nghyfeirio at gynecolegydd oherwydd diffyg mislif. Roedd archwiliadau mewnol yn brofiadau erchyll. Roedd rhaid i’r meddyg teulu roi sedatif i mi er mwyn i mi ddelio gyda’r apwyntiad. Nid oedd unrhyw sôn am endometriosis.

Erbyn i rywun sôn am endo, roeddwn wedi gweld pedwar clinigwr gwahanol. Nid oeddwn wedi clywed am endo ag roeddwn yn gorfod gofyn iddynt ysgrifennu fo lawr i mi.

Mewn apwyntiad gyda gynecolegydd roeddwn wedi ei weld yn gynt, ond nid oedd wedi sôn am endo, dywedodd os mai endo oedd o, roedd gennyf ddau ddewis, cael plant neu lawdriniaeth i dynnu’r groth. ‘Defnyddiwch o neu collwch o!’ Nid oedd yr opsiynau yma yn swnio’n iawn i mi, ag rwy’n falch dweud wnes i ddim cytuno iddynt. Cefais lawdriniaeth ‘twll clo’ gyda llosgi yn 2009 ac wedyn yn 2012. Roeddwn yn meddwl fy mod yn cael y driniaeth gywir a’r driniaeth orau. Pam buaswn yn cwestiynu’r person roeddwn yn cymryd yn ganiataol oedd yr arbenigwr? Roeddwn yngwybod fod llosgi ddim yn wellhad ag roeddwn wedi derbyn byddaf yn cael llawdriniaeth yma bob tair blynedd.

Oddeutu Medi 2014 fe ddaeth y boen yn nôl yn raddol felly fe wnes i ddechrau postio mewn rhai o’r grwpiau cefnogi endo ar Facebook. Fe wnaeth nifer o’r grwpiau yma wneud i mi gwestiynu fy hun os oedd y boen mor ddrwg â be o ni yn ei deimlo. Roeddwn yn gweld fel bod yna gystadleuaeth hefo pwy oedd gyda’r boen waethaf ag y safon uchaf o endo ac yn y blaen. Doedd dim cynigion am wella yna. Diolch byth i ferched FTWW fy ‘achub’ a helpu i mi ddeall fy symptomau.

Mae FTWW wedi fy achub. Mae’r gefnogaeth gan y merched i gyd yn y grwp Facebook yn anhygoel, ymarferol, realistig a ddim yn gystadleuol. Nid oes unrhyw destun ddim yn cael ei drafod.

Dim ond drwy FTWW dwi wedi ffeindio allan mai trychiad a dim llosgi ydi’r driniaeth safon aur ar gyfer endo. Dim ond drwy FTWW dwi wedi cael gwybod am Ganolfannau Endometriosis BSGE. Dim ond drwy FTWW dwi wedi cael gwybod am y llwybr cyfeirio i ferched yng Ngogledd Cymru i  Ysbyty Arrowe Park. Dim ond drwy FTWW dwi wedi gallu rhoi gwybodaeth i’r meddyg teulu am y ffeithiau cywir ag am y llwybrau cyfeirio yma ag i ofyn am gael fy nghyfeirio.

Dim ond drwy FTWW cefais fy nghyfeirio at y ganolfan arbenigaeth, cael llawdriniaeth trychiad ag cael fy mywyd yn ôl! Dim ond oherwydd FTWW mae fy ngŵr, a pawb o fy ngwmpas wedi cael eu gwraig, chwaer, modryb, ffrind a chyd weithiwr yn ôl.