Saturday, March 5, 2016

Maxine's Story - Endometriosis Awareness Week 2016

I put the call out to "Finding Peace With Endo" on Facebook, looking for anyone who would be willing to share their story.  In addition to Audrey answering that call, Maxine reached out to me saying that she would like to spread awareness of this disease as well.   I shared Audrey's story on Wednesday.  And today I am so fortunate to share Maxine's. Maxine openly shares her medical journey and quest for understanding.

I truly believe that we all have a story to tell, and that as long as we are honest open and willing, what comes from the heart, goes to the heart.

Thank you, Maxine, for your honestly and openness!  Your story has the ability to help so many.

This is Maxine's Story

I was 45 yrs. old when I was diagnosed with Endo, 

I was told at the Women's Hospital in Birmingham UK after a scan for checks on pain to my side I'd been having that I had a bit of Endometriosis on the left side of my pelvis /ovary area, this was March 2015 . 

I had started getting really painful twinges in my left side especially around my period time but for a while after the period for about two weeks post and my periods had become heavier, it wasn't 'normal' pain it was like a burning stone inside me that throbbed and hadn't been there before, it seemed to ease after Id been to the toilet, but progressively became worse. I had mentioned it to the doctor several times but was initially told it could be bowel related and to change my diet eating more fruit and fiber . I did this and at first it seemed to ease it a little but the pain started getting worse and the heavier periods made me go back again and demand further  investigation, I was also not getting pregnant and after trying for over a year thought it might be worth a look in to.  I was sent for an internal scan and external at the Women's Hospital about a month later .  

After being told there was a small amount of endo on the left side and a small cyst in my ovary and a small fibroid I was then going to be referred to another hospital for further investigation. I had to go to the Priory Hospital in Edgbaston , Birmingham Uk to see a specialist gynaecologist. I had a consultation, an internal on the first day where she confirmed endometriosis right at the back of the cervix.  I was then booked for bloods to check traces of Endo and an MRI Scan, the bloods showed up traces of confirmed Endo and the MRI scan showed severe endometriosis on the left hand side all over my ovary, near the bowel and at the back of the cervix wall, three ovarian cysts called endometriomas, small fibroid in my womb, tilted womb ! 

Due to all of this I was offered either hormone treatment to shut everything down .... which could bring on early menopause I was told, or a Laparoscopy which would drain the cysts and remove some of the endo where possible .  

I had the Laparoscoy in Sept 2015 . 

Since the Laparoscopy I have read so much in to Endo (and still reading up on it) so that I could make some life changes to improve my situation as it isn't something that can be easily be fixed if you like.  I have started taking Vit B6, Omega 3 Oil (krill oil ones), I avoid chocolate or too much sugar, Soya Lecithin, alcohol I have reduced. Before that time of month I eat bananas more and drink more water and definitely less alcohol which seems to be a headache causer for days. 

Pre Diagnosis - I was having heavy periods which would make me drained, light headed, night sweats, feel nauseous, headaches, severe pain for at least the first few days, no appetite, very teary and down and weak, no concentration and pmt and post sometimes.  
Since the diagnosis I have been able to make some life changes that have definitely helped me, since the Laparoscopy I have had less pain, shorter periods, less headaches if none at all, less weakness and no night sweats, period times had definitely been a lot easier to deal with . 

Prior to my diagnosis I had heard of Endo and had looked in to it some what wondering if I had it but when I asked at the doctors was always told that I didn't have it?! and that I would show other symptoms if I had Endo.... an old flat mate had got Endo and used to run an Endo Helpline and she even said she thought from what I had mentioned that I could have it but with not being diagnosed and not really wanting it I think I didn't pursue this and just lived with really painful periods thinking this was just unlucky for me ! 

Since being diagnosed I have found my partner really supportive and he has dealt with it well but its hard for me to explain sometimes how I feel and that I can be angry about things and want to cry but I don't want to go in to great conversation to him on how I feel as he cannot take it away anyway. 
At work as I have male bosses, I am a very private person anyway and I don't want to have to explain anything about my body in such a personal way so if I had to say about my laparoscopy one of my bosses wouldn't want to know anything was almost like yep yep whatever you have to do ... and the other one wanted to know too much and go in to all the details so I found it hard both ways ! 

Socially I find it hard at times because people want to always drink loads and if it's coming up to that time of the month I know drinking too much alcohol is really going to aggravate it so I feel awkward about getting involved ... one I don't want to explain why i'm not drinking but to them it may seem anti social so its a tough one , even that one I have to keep  reminding my partner on this and he doesn't always get it. It is sad and frustrating because I used to have more fun going out but now I feel my life is restricted. 

I'm disappointed that the medical profession didn't look in to my pain earlier I cant help thinking that if they had caught it earlier I could have changed things quicker , helped me with fertility issues quicker, had less pain over the years.  When I first went to the doctors they said they couldn't help me with fertility issues due to my age I was (45) and I know this may be old for some but I am still hopeful I don't smoke, I'm not over weight I love children and still have the desire to have a child naturally .... I don't know why with all the progression that the medical world does that they are so anti older women, I have far more to offer now than I did in my 20's and each to their own. I was told though ethically it wouldn't be right ?!  I told them that I didn't want help with IVF etc anyway I wanted to know WHY I wasn't getting pregnant and why I was in so much pain.  I think this was dealt with wrongly, is it their decision to choose to not allow me to have help having children but help someone else due to purely age ?! isn't that ageist ! I was told I am still fertile and other than my Endo I could still potentially get pregnant so why so against it , financially too I'm better off isn't this all better for the child , plus my partner is ten years younger than me so would they not help him , how does that sit ethically ? 

The consultant at the Priory hospital was lovely and was not judgmental about my age and still having the desire to have children hence why I chose there and not with the first hospital that refused any help, the Women's Hospital.  The Priory just gave me the bare facts and said it was my choice, I have chosen to still live in hope of having children for now and to deal with things naturally ie acupuncture, herbal medicines and supplements and healthy diet . 

Finally my hope in sharing my story is to recognize symptoms of Endo quicker so women don't suffer and don't think that a really painful period is 'normal', that the condition is talked about more ,understood more, cures are found for it , women can understand how to potentially ease the symptoms of it etc . Doctors test for it quicker and don't fob people off with pain killers.  Sharing issues like these help, I know that and appreciate a listening ear and welcome the opportunity to share my story to help others hopefully . 

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