Living With Endometriosis my personal experience which lead me to starting my own business Simmy’s Helping Hands
What is Endometriosis?
Endometriosis is a medical condition that affects women. The lining of the uterus named the endometrium grows in various places that it basically shouldn’t like ovaries, pelvis, bowls and more. When one Is having a period the lining of the uterus breaks down, well when these are in various areas like the fallopian tube or ovaries the lining has nowhere to go. Here are some of my personal experiences and symptoms:
Physical Symptoms of Endometriosis:
Pain during before and after menstrual cycle
Pain in various locations of the body, back, leg, ankles, knees and more
Painful periods
Fainting
Vomiting
Nausea
Headaches
Infertility
Fertility issues
Painful sex
Bowl pain
Fatigue
Psychological:
Stress
Anxiety
Depression
Suicidal thoughts
Paranoia
Emotional Wellbeing:
Guilt
Shame
Embarrassment
Misunderstood
Lack of confidence
Social:
Missing out on events
Withdrawal from social interactions
Breakdown of relationships
Fear of being sick when out
Education/Work
Sick days
Missing school
Sick during exams
Loss of employment
Lack of confidence
Restriction of mobility
Side effects of medication
Isolation
Getting a diagnosis the 10 year search
From the very beginning at around the age of 9 I suffered with period pains and as I got older the pain got worse. I remember going to the doctors when I was around the age of 16 and being put on the pill. WOW the best 5 years of my life began. No PAIN No SYMPTOMS I could not believe it I was finally free and I enjoyed my new pain free existence to the max. It all ended though after 5 years as I started getting the symptoms back, fainting, vomiting and pain all over. I went to the doctors and saw the nurse who told me to monitor my periods over the next few months as it may just be temporary. I went back and literally had to drive to the doctors which is only actually a 8 min stroll away. I managed to get out of the car and literally drag myself into the doors. Sitting down was painful and getting up from the seat well….lets just say I didn’t bother as I didn’t want to struggle getting up. I saw the doctor who was arrogant, rude and simply had know manners and was told that its just a painful period. I left in TEARS and called my boyfriend who told me to book an appointment with a gynaecologist and see them privately.
Off the Harley Street to see a Gynaecological consultant WHAT A WASTE....
Off to Harley street we went. Meet a gynaecologist who found out that that I had fibroids 6 in total with one being big (4cm). He instructed that I just leave them there and take some anti-inflammatory tablets for my pain. DID this work? NO. I still had no pain relief and the only solution he suggested was to have a hysterectomy? REALLY?
The Day I meet my IRISH ANGEL
My period came again and I was in pain and this time my knees where really killing me with pain. I went to the doctors and saw the nurse and was told that nothing was wrong. I don’t remember how but we got onto the subject of my period but I told her what had happened with my gynaecologist and started crying. She gave me the information regarding Mr Colin Davis another gynaecologist and said that he was very good. I didn’t have anything to lose so I went online and booked an appointment and got a reply very quickly and saw him within a week or so.
The day my life changed….
I sent over my scans and meet with Mr Colin Davis. MY LIFE CHANGED….I WAS GETTING SOMEWHERE. Mr Davis was and is an exceptional Consultant, Surgeon, Fertility and Endometriosis expert. Mr Davis patient care is empathetic, non judgemental, caring and holistic. For the first time I felt: listened, understood and helped. My Davis gave me a factual well-grounded informative education on fibroids and what may be causing me to have painful periods ENDOMETRIOSIS. I had never heard of it before and Mr Davis gave me all the details answering mine and my husband’s questions. He gave me his book (An Atlas of ENDOMETRIOSIS Third Edition 2007) and I was able to read and understand what may have been going on with my body. Mr Davis also printed out information and drew diagrams explaining what may be the cause of my condition.
Plan of action
We decided that the best option was for me to immediately stop taking the pill due to it causing the fibroids to grow and upon review see what the situation was. If the fibroid grew bigger to around 6 cm I believe my only option would have been open surgery as opposed to key hole. Not only that if I had left them in there to grow I may have had serious complications getting pregnant and giving birth. I had a series of tests, scans and then surgery to remove the fibroids and Endometriosis. I had lost around 3 stones in weight due to having bowl problems some may have been due to stress as I was enrolled on my Doctorate course which was stressful. Mr Davis got another great Surgeon who is a Gastroenterologist to be present during the surgery as my Endometriosis was on various locations around the bowel. The consideration of having another specialist present may be have been optional I don’t know but the fact that this was discussed made me feel confident about the whole process, and knowing that they have worked together on past surgeries.
Surgery
Upon returning for a follow up 2 of the small fibroids disappeared but the larger one had grown and we decided to operate. The surgery went well and took a little longer than expected due to the Endometriosis found but Mr Davis was able to take away the lesions that was present. My after care was fantastic and Mr Davis came by every morning to check up on my condition and pain. After a week in the hospital I was discharged and returned to work and my studies the following week. After a few months, I started noticing that I was suffering from bad back pains and after a MRI scan we discovered that I had more Endometriosis sticking my bowls and uterus together. We discussed further treatment options in terms of treatment, medication and alternative medicine. At that time because paracetamol and ibuprofen wasn’t working I took codeine also which did help although left me sometimes spaced out. Alternative options would have been to have taken Zoladex which puts your body in a pre-menopausal state with possible side effects but you can only take this in the short term.
Fertility, MMS and Pregnancy
Due to my low levels of eggs we all discussed the realistic issues around fertility and my current condition. Whilst trying to have a baby I did have a miss miss carriage. During this time, we also decided to give acupuncture a go during this period to help with my pain management. A few weeks after I completed my treatment I became pregnant with twins.
Endometriosis after birth.....I’M CURED?!...REALY? NOT!
After having my twins my period started within 3 months of giving birth and my symptoms were back. I was so worried about how I was going to cope especially when I had two babies depending on me. I booked an appointment with MR Davis and we checked to see what was going on especially with my Fibroids. I remember speaking with him and just breaking down which has not been the first time. The fear of being so physically and emotional sick felt like I was experiencing some kind of post traumatic stress disorder. As soon as the symptoms started coming back my mind just went into over drive and physically I became anxious tense and ruminated in a lot of negative thoughts. Memories of me fainting or not being able to get up off the floor, vomiting everywhere, and having to call my husband at work to come home and help me just frightened me. Mr Davis is very intuitive and before I had really understood what I was expressing he was able to tell me that my fear and worry of getting so sick again is making me so fearful even though my symptoms where not as before. Since then I have been monitoring my Endometriosis and so far, I have had a few up and down months with good rest periods in between.
The Tug of War with my Endometriosis
I never want Endometriosis to win and take over but it does in reality and I have come to accept that. So right now my mind body and soul are trying to negotiate as I have two babies to think about. My Endometriosis might not be cured but having my twins gives me that extra mental strength to fight it and not let it consume me fully. I really don’t know what path or mental state I would have been in had I not fallen pregnant with my twins. Living with this crippling mind messing condition is a battle and some people live like this being told its NORMAL IT’S A PERIOD GET OVER IT. Well I tell you this when you’ve got to work and provide for your family and your education, work and life dreams are affected sometimes months on end its simply not that straightforward to GET OVER IT. I have had to make life changes because of my condition and fight with employees thinking that I’m somewhat of a slacker a liability all because I can’t psychically and mentally cope. I am more open now when discussing my condition with people now as I feel that I have a duty to inform other women who may be suffering with painful periods to get this checked out and not wait or brush it off. If I speak up maybe someone will get the help and support. I was lucky to be in the right place to meet my nurse and consultant not everyone is.
Starting Over
One of the reasons I started Simmy’s Helping Hands besides having an awful experience with my past manager (See Blog I QUIT) was because of my health. Living with Endometriosis for me is so up and down and due to my past role as a CBT Therapist working with clients that depend on me is very demanding and yet so rewarding when the client achieves their goals through therapy. I would never want to miss a client’s appointment or be to ill to really be present with a client. Leaving this role is and was a painful decision but I am happy with my new found direction. I know that I will always have us and down days with my Endometriosis but starting Simmy’s Helping Hands and being in full control means that I can really focus 100% on working around my disability whilst still providing good customer service. I have worked over the last 10 years and studied with my Endometriosis and have never let a client or customer down. The only person I neglected was myself I never took time to mentally deal with my condition and the physical effects because it was not my priority. Now I can have a balanced approach and I guess not worrying if I’m going to miss a client's appointment because I’m so ill really releases some of those worries for me as well as dealing with colleagues and managers. Even though people would not come out and say it to my face I really understood the passive aggressive undertones. I could see and feel the changes of attitude when I had to have time off due to my condition and it was evident when managers would give me a written warning due to my high levels of sick even though after working for that company I had practically no sick days for almost 5 years. Not all my work experiences have been bad and I have had some really supportive clinical supervisors but equally the bad experiences sometimes outshine the good ones and often left me feeling ashamed and weak because I was not able to pull myself together or just take pills and be cured. Now it’s all on me and I love the freedom of being my own boss.
Thanks for reading and I hope you found this useful in some way. Please feel free to share and comment below.
Endometriosis Information:
Helplines and websites like www.endometriosis-uk.org
or NHS www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx give you a lot of information and support.
On twitter www.Endometriosis.org and so much more.