Yesterday was an important day

Yesterday was an important day for two reasons:

1. Yesterday marked the one year anniversary since my first excision surgery.

A year ago I was sitting in hospital, full of hope and expectation. A year ago one of my consultant’s juniors looked me in the eye and said my consultant had removed all the disease. A year ago I was told I was endometriosis free. A year ago I was told the pain I was experiencing was normal. A year ago I was going through hell getting over my surgery. A year ago I never predicted or expected the journey I would have to undertake between then and now.

Only a few weeks post op I noticed a familiar pain resurface, the instantly recognisable twisting stabbing pain of endometriosis; this pain was often followed by bleeding. During one particularly bad episode I ended up in A&E in Altnagelvin and I was referred to gynaecology. After scanning, internally examining and going through my symptoms with me the young Dr looked me in the eyes and simply said, “I don’t think you need me to tell you wants wrong, your endometriosis is flaring up.” I remember crying and repeatedly saying that I had just had excision surgery and my consultant got everything. The Dr shrugged and told me that some must have been left behind and I should make an appointment with my consultant.

At the time my consultant has a long waiting list so I paid to see him privately to discuss the matter. I sat in his fancy office and calmly talked him through everything that had happened. He dismissed my concerns, he said he had removed all this disease and that I may have Adenomyosis. I left the consultation confused and concerned about my new diagnosis – the treatment for which is a hysterectomy. During the next few months my pain intensified, I had trouble with my bladder, bowel and intercourse still caused horrendous pain; I made another appointment with my consultant. I reiterated my previous concerned and explained the worsening symptoms. Again my consultant was dismissive, stated he had done all he could and there was nothing more could be done for me bar a hysterectomy which he wouldn’t even entertain the idea of doing because of my age. There was no more endometriosis, he had done the best job that could be done. I was probably going to always have this level of pain, probably caused my adhesions, scar tissue and adenomyosis.

I honestly cannot begin to explain how it felt to be told that that was it, that was all that could be done, that how I felt was the best I ever would be. I was 25, I had my whole life before me. I could not comprehend living in constant pain. I could not comprehend not making love to my partner. I could not comprehend a life of opiate pain relief. I could not get my head around it. I could not get my head around any of it, how was this ok? How could anyone say that’s it so easily? Wasn’t there anything that could be done? I had lost the fight and worst of all I lost the will to fight; I had been told my someone I trusted that there was nothing more that could be done and I believed it. I lived with this diagnosis for a few months, during which I found myself back in A&E on a regular basis. After one trip to A&E I thought enough was enough, I could not live like this, I deserved better. So I started researching around and found another consultant who was highly recommended in the endo field. I booked a private appointment, which at the time I could ill afford. I remember considering cancelling it, thankfully Chris advised me not to. Boy am I glad I went.

I seen the consultant on June 1st 2015. I told him about my symptoms and where the pain was and he listened intently. He did an internal examination and within seconds he located what was causing my pain – two wonderful nodules of Deep Infiltrating Endometriosis (DIE). Nodules he could feel. He said I would need surgery. He dismissed the idea of adenomyosis because of the location of the pain and the obvious presence of DIE nodules. I walked out of his office crying, happy tears. I had to fight damn hard for twelve years to get my first diagnosis of endometriosis and had to fight AGAIN to get it diagnosed even after having a history with the damn disease!!

2. Yesterday I had my review appointment following my second round of excision.

I am healing much better this time, the familiar pain isn’t there. I am having some right side throbbing pain but it is relatively minor compared to what I am used to. So I went into the appointment more confident than I had last time. I explained the right side pain and my consultant offered to check it out. He did an internal scan AND IT DIDNT HURT!!!! Apparently internal scans and examinations shouldn’t actually hurt! I have never known this; I had always thought the pain I experienced was the unpleasantness woman talked about. He scanned both ovaries and all was normal, no cysts or blockages. He talked me through all the disease he removed. My bowel, lower uterus and area between the bowel and uterus had a lot of DIE. I had significant scar tissue on my pelvic floor which he cut back. He was pleased with my progress and I am happy with how the healing is going. My right side pain is most likely from all the work done in that area; he warned me healing after such extensive surgery can be slow and I might still get twinges of pain for 3 – 6 months until the nerve endings heal and start firing signals correctly.

I asked him about the disease he removed, explained that I was told after my excision surgery last year that all the disease was removed but it came back in under a year, was this likely to happen again. He said that the disease he had removed had been there for some time, it was left behind after last year’s surgery. He went on to explain he would expect me to get 5 years (or hopefully a little longer) before the endometriosis would grow back. He will call me back to review me in 4/5 months to see how my healing has progressed.

I cannot believe the difference one year makes. I offer this story as motivation and encouragement to all the women out there battling with their endo demons: a Dr that’s given you a diagnosis you know deep down is not right, if you have lost the will to fight because a Dr said that nothing more could be done and you don’t have the confidence to seek a second opinion. You know your own body, you know what it is telling you, you just need to find someone who will listen. I also now fervently believe it is vitally important to get a second opinion if you are told that’s it, that is all that can be done. We deserve to be the best we can be, we must fight for ourselves! We must fight for our families, our partners, our friends, our endo sisters! We cannot and should not accept such a condemning verdict. Medicine has come a long way and there are solutions out there, you just got to find them!

This has been such a learning curve for me, I have no hate for my previous consultant – anger eats at me and changes nothing, but that is an article for another day. I am now off to enjoy my White Russian, a personal toast to me and my disease free uterus! Cheers and Good night!

x

facebook.com/theendodiary

7 Replies

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  • Thanks for this post, great to hear good news! X

  • Amazing! Thank you so much for posting and congratulations!

  • Amen. We so long to be fixed that they don't release the crushing affect they have on our hope when they can't help or give us the worst outcome.

    I have lost the will to fight atm , my soul is crushed . I'm 5 days post lap with nothing removed after waiting 7 years to get it confirmed.

    I will fight again and start again through the system, but it's truly exhausting up against doctors whilst ill and hormonal.

    I'm glad your pain free atm . Merry Christmas xxxxxxx

  • Boo boo08. Thank you for your message. I'm so sorry how things have went. Its so cruel to be put through that.

    I had a lap done in July 2014 were I was opened, diagnosed with endo and closed with no treatment. Keep fighting, its honestly worth it. You'll find someone who will remove it. Its validating to finally get a formal diagnosis, it's easier to push for a good treatment when you have surgical notes that state you have the disease.

    Good luck with getting your endometriosis treated. Youre half way there.

    Merry Christmas!x

  • i am in a similar position too. from results of scans and examination the dr said stage 4 endo. i was told it would be a life long condition and that i had to have a lap to remove. had the lap but said there wasnt anything there so was discharged!?! the last 12 months or so has been such a struggle to get the care i DID need. i had to push to get referred back and then to see an endo specialist. following other tests and an mri im now told i have not only endo but adenomyosis and pelvic congestion syndrome too!! it is so hard mentally to be told you have it in the first place, then to have it taken back, and then to be told you have worse than they first thought. my head has been all over the place but it is a strange relief when they do say YES u do have something. i was made to feel like it was all in my head and it was even harder getting people to understand after my op. if they didnt find anything there mustnt be anything wrong with her!! its a long hard road.

  • Dawntildusk, I'm really sorry to hear about your experience. That is horrible. It is so cruel.

    I had a lap at 16 and was told there was nothing and had to fight until I was 25 to get a diagnosis. It messes with your head so much.

    One thing I've learned is that it's important to listen to your body, you know it best.

    Keep searching for the best treatment for you its 100% worth it. Don't lose the fight now!x

  • Reen_Bean,

    Thanks for a great post. My story is very similar. I'm so glad things worked out for you. You are absolutely correct about getting a second opinion...or even third or fourth if necessary to find the right surgeon to do the best operation.

    I hope your post inspires other women.

    Merry Christmas and a very Happy 2016. x

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