Help me to get a surgery to get my life back

Here in Sweden I was connected to the Endometriosis team and after a laparoscopy in 2016 they confirmed my disease was back but didn’t remove any of it and instead started treating me with high dosages of hormones to stop me from having my periods and even though the doctors said that their treatment had my disease under control it didn’t. I just got worse and worse during these two years and after the summer of 2018 I came to my endometriosis specialist asking for a surgery to have all the endometriosis they saw during the laparoscopy almost two years earlier removed. Even if she said she could give it a try she said that the chances of it helping me with symptom relief was very low. I was so so sick and had weird bruises all over my body which no doctor could explain, I wasn’t responding to the meds for my autoimmune diseases and my Rheumatologist even wrote in a dictum to the Swedish social insurance agency (Försäkringskassan) that my odds of getting any better than this with his experience was very small.

 

Something inside me said that the endometriosis triggered the other diseases but I never got any response on that theory from my Swedish doctors but I really felt that my life soon would be over and the one I had wasn’t even worth living mostly being in bed in horrible pain and cramps. I took my last savings and the very little energy I had left to go to London for a second opinion seeing dr Peter Barton-Smith. Even if they didn’t find much on the ultrasound I had done he could explain all my symptoms and was also sure he could help me.

 

Six weeks later I came back to London and had an extensive excision surgery performed by him. Since I had done a laparoscopy in Sweden exactly two years prior to this we could compare the results of the hormonal treatments I underwent during this time and in my case they hadn’t helped at all. The endometriosis had spread further and when I woke up after the very long surgery I cried like a baby. Dr Barton-Smith came to see what was wrong and I told him those were happy tears. The pain I had suffered from for 2,5 years was finally gone and it felt like I could breathe again. I can’t explain it better than that it constantly felt like I was in labor but instead of a baby my uterus was trying to push out a ball filled with needles and knives.

Just a few months after the surgery in London I started responding to my chemotherapy and the biological treatments for my other diseases and six months post-op my tests was starting to get back to normal. But even if the surgery in the UK was a huge success I had a long way back with the chronic pain that the endometriosis had caused me, the fatigue I had because of my body’s constant inflammations during these years and sadly all the mistakes the Swedish doctors had done and all the time that went by without me getting the treatment I needed.

 

Everyone who knows me knows that I never give up and one year after the surgery (in late 2019) I was back on the horse again and started to see the light of the tunnel. We planned for me to start to work again in the beginning of 2020 and the ink on the paper’s clearing me for finally getting back to work hadn’t even dried when Covid came and the pandemic put a stop to all those plans since I’m on immune suppressant medicines and therefore were at risk of getting covid so instead of starting to work I had to stay at home for the most of the time to not risk getting infected by this virus that was spreading all over the world.

 

During the pandemic sadly my symptoms of the endometriosis slowly started coming back. Even if the procedure performed in London was a success you have to remember that this is a chronic disease. For some it can stay away for decades after having a surgery and for others like myself it can come back in a few years (this probably has to do with my autoimmune diseases and my general health issues too).

 

As soon as I got the symptoms back I started every single treatment there was to get the symptoms under control. Because in the beginning they weren’t all that bad but I wanted to keep it that way. That strategy helped for quite a while. I did physiotherapy, rehab, tried so many medications I don’t even remember all their names (even one for men with prostatic problems), I saw specialist after specialist and underwent so many different examinations.

 

My endometriosis specialist here in Sweden was from the very beginning of my symptoms coming back having the opinion that when we’ve tested everything else a surgery would be needed to “clean up” just like Dr Barton-Smith did in London 2018.

 

In May 2021 I finally had my two first shots of the Covid vaccine and finally started to work again which felt like a blessing even if the doctors explained I’d probably never will be able to come back to where I was before I got sick and never be able to work full time again because of how damaged my body actually is. But my doctors and my rheumatologist in particular was also thrilled since he was one of them who never thought I would be able to do it at all.

 

During the summer of 2021 the symptoms of my endometriosis started getting worse and worse. It started affecting my ability to go to the office and some days I could just lay on the sofa in brutal pain making my body soaking wet from it. At first I fainted every single ovulation but never during my periods (now they have confirmed one of my ovaries is stuck and that’s probably what’s causing that pain that makes me faint). During the summer the symptoms around each period started to become worse and worse. I faint from the pain, I throw up because of it and it forces me to lay down most of the time. And by this time it also started to affect my other diseases more and more and they needed to upper the dosage on my chemo treatment just to keep the diseases under control (but it barely helps and I’ve had several flare ups forcing me to go onto cortisone treatments for months on top of everything else).

On my latest visit at my Endometriosis specialist in September we agreed it was time to have that surgery because of how it was getting out of control again and how much it affected my everyday life. My doctor sent me on a qualified ultrasound to make sure no organs were stuck and as he said it “so that there wouldn’t be any surprises on the operating table”. Time went by and I had the ultrasound done in November and was just waiting for my specialist to get back to me with planning a surgery.

 

But then something happened. Everyone who lives in Sweden has seen all the headlines of how much the budget cuts are affecting the health care at the hospital I’m at (who also has the assignment to be The National centra for highly specialised care of endometriosis) called Södersjukhuset who now suddenly changed their minds and denies me the surgery I’m so desperately is in need of. First they said it was because of the fact I was symptom free for too short of a period. When I then asked “so it’s a matter of money and what I’m worth?” my doctor changed his answer to that there’s evidence that says that these surgeries are equal to placebo (Sweden is the only country who has come up to these conclusions from the same research all other countries specialists now are even more sure that robotic excision surgery is a very effective and in many cases well needed treatment for patients who like in my case never had any effect from hormonal treatments (which also comes with horrible side effects that I will suffer from for the rest of my life m like Hyperhidrosis). His last try to give me a reasonable explanation of why they denied me surgery was based on all the risks with this surgery. I asked him which risks he was referring to and every single one of the ones he mentioned is because of the lack of experience from the doctor and since Sweden hardly does any of these surgeries the specialists won’t get enough practice on it so the risks he mentioned was due to lack of experience on the procedure which made me 100% sure I wouldn’t want to take the risks anyway and I started my search for a specialist in EU who could help me (since the UK no longer is a part of it).

I got to hear about this really good doctor who had dedicated his life to help women with endometriosis in Romania, Dr Gabriel Mitroi. Several other Swedish women has already been there and his reviews from them made me confident that he was the one I wanted to reach out to and hope that he would take me on as a patient and I sent him all my medical journals, test results, scans, surgery reports from previous surgeries and everything else and after many conversations I am now booked for a surgery on the 29th of June. The days before the surgery they will do a lot of exams and tests.

 

I am so thankful for Dr Mitroi to take me on as a patient and even if I don’t even know right now what the extend of the surgery will be I am confident in that he can help me getting my life back. Not just for me. Mostly for my three sons who needs their mom and the decision they took in Sweden to not allow me to have a surgery is basically taking my life (that I finally started to get back) away and sending me on a path where I will become worse and worse for every month that goes by and very soon be where I was in 2018 where I didn’t think I would make it over the new year’s and when I hardly could sit with my family having dinner and mostly laid on the sofa or in the bed. That was a nightmare and it’s so horrible how my doctor could take this decision knowing what the consequences of it will be that my kids would loose their mom, I would loose the ability to work again and be depending on others for the rest of my life. That’s not a worthy life and the decision they’re making is based on politics and budget cuts and not science or what’s best for the patient which is both against the law and my rights as a human being.

I was never compensated by the government for anything from the surgery in London even though I had all rights to it. I fought for it in all three courts that I could appeal to but wasn’t even given a fair chance. Since I’ve been sick for such a long time my economy isn’t the best and therefore I am reaching out this way asking for help to finance the trip and surgery in Bucharest and to help me get my life back because I miss it so so much and this horrible disease has already taken so many years from me and the longer I wait the longer and harder the journey back will be.

 

The estimated cost for all the tests needed, MRI, surgery, hospitalisation, travel and accommodation until I can go back home again etc is around 5000 euro. It there would be anything left I will donate it and the same is if Sweden by any chance actually would give me any compensation afterwards I would either be happy to pay every single one who helped out their money back or if you prefer donate it to research on this disease and also on children cancer research which is something I make donations as often as I can.

 

Thank you so much in advance from the bottom of my heart if you decide to help me to do this and give myself and my whole family the chance of a life without me being on the sofa in pain 50% of the time like it is right now.

 

If you have any questions please feel free to reach out! I try my best to spread knowledge about endometriosis because even if 1/10 women all over the world suffers from it the knowledge is very little and there are so many more out there suffering and not getting the help or treatments they need.

I have an Instagram for my "sick alterego" (I will never identify myself as a sick person if you want to read more and I wrote a lot about the surgery back in 2018 there. I will start updating there again for this purpose and also to help spread the knowledge about this horrible disease. Follow me on @my_chronic_alterego or my regular account @unixangel where I also write a lot about it (it's mostly in Swedish but I will start to do both Swe and Eng from now on). 

Love Lina <3