I hesitated a lot before creating this page. I mean, discussing medical conditions is really personal — and to go through what I’ve been through … well, not many people would want to share those types of details. However, I know that when I was doing research about my condition (uterine fibroids), reading other people’s experiences was extremely helpful to me. For one thing, it made me feel like I wasn’t alone. Secondly, I was exposed to many different perspectives.
When reading about someone else’s health issues it’s important to remember that each person is different and that though you may have the same general condition, the impact of general health care, medication, and other treatment methods will vary depending on your own history, your genetics, and your general lifestyle habits. Keeping that in mind, I know that the stories shared made a huge difference in how I coped with my condition.
I decided to have this info on a separate page because I know not everyone will be interested. I’ve also decided to have this page to provide a bit of background about my health because I don’t want to keep rehashing the story each time I mention my pain in my regular blog posts. I do hope, overall, that providing these personal details will be of some help to other women who may be in a similar situation as me.
There are many reasons why I want to lose weight. The main reason is because I want to be healthy – I want to be energetic and not feel tired or achy when engaging in daily activities. Luckily, I don’t have those aches and pains, but unless I lose the weight now, I know it may catch up with me in the future. The other fear I have is of diabetes and heart disease – both run in both sides of my family – and cancer, an illness that is becoming more and more widespread and has affected many family members as well, including my own younger brother (who is currently fighting hard through his treatment).
I’m very thankful that right now my being overweight has not caused any other health problems. My blood pressure, blood sugar, cholesterol, etc. are all absolutely fine. However, I’m in my late-30’s. If I don’t get into shape now, then the chance of falling sick increases every year. Why increase the risk by not taking care of my health?
Once you develop the discipline, losing weight is not impossible. However, the one health problem I’m really suffering from is uterine fibroids (UF). UFs are common among women; however, the ones I have fall into the more severe category as they grow and multiply quickly.
Very briefly, after a couple years of being in severe pain, I finally went for a check up during which the gynecologist was shocked by the size of the fibroids that were growing in and around my uterus. Immediately after the diagnosis in 2008 I had a myomectomy to remove 12 uterine fibroids, the largest of which was 12 cm. The surgery was successful, but unfortunately, the fibroids started to regrow.
In the summer of 2011 I had another medical check up and was told that the fibroids were in dangerous positions and were pressing down on my organs. I would need another surgery as soon as possible. I waited a while, but the pain got to be unbearable. Instead of going for another myomectomy, in October 2011 I decided to go for a hysterectomy.
Aside from having to deal with judgmental doctors both in London and Kuwait about the bad choice of having a hysterectomy at such a young age (mid-30s at that time) without having any children, the surgery as not a success. So many adhesions (scar tissue) had grown that they were unable to remove the uterus or any of the fibroids (except for one small one at the surface). So I have been left with 8 fibroids, the largest of which is 8 cm and really pushing down on my bladder. The surgeons in Kuwait said that the condition was inoperable.
Ever since then I have been in pain or discomfort on a daily basis. The dull throb in my lower abdomen is constant, but I’ve gotten used to it. The pain comes in spasms, at least one daily (if I’m lucky) otherwise 3-4 times a day as sharp pains – and sometimes a lower intensity of pain but more frequent.
I’m very aware of their pressure. My lower abdomen is firm, but not firm in the sexy muscle type of firm, more like I’ve got a damn alien growing inside me type of firm.
I try to ignore it, but some days it is really hard.
Since surgery was not an option, I knew I needed to do something to alleviate the pain in some way. I did not want to take pain medication so I decided to try acupuncture. I went for regular pain management acupuncture treatments (on a weekly basis for 2 months) and it really helped. I was slowly able to ween off the sessions, coming down to one session a month within a year. I know that there are a lot of people out there who don’t believe acupuncture works, but in my opinion, if I’m not feeling as much pain (whether it’s real or psychological), then I win.
My last doctor’s appointment was in February 2014 and the news still wasn’t good. In particular I have 3 fibroids prominently sitting in my lower abdomen measuring about 12 cm each. That’s massive!! At the moment their positions not causing any real danger to my surrounding organs, which is a relief. However, knowing that they are there and feeling them in my abdomen every day is emotionally and psychologically very difficult to cope with. It’s hard for me to be so involved in physical fitness and healthy eating habits when I know that I’ll never have a flat abdomen no matter what I do.
It would be really easy for me to get hung up on my condition, to throw my hands up in the air and think – why bother? However, I know that good health goes beyond a body measurement and a number on the scale (though I do believe those are important aspects). There are many things I can do to continue to get healthier. I can focus on getting stronger, building more muscle, losing more body fat, and of course continually tweaking my diet. As difficult as it is sometimes to ignore the pain and push the frustration and depression aside, I am determined to not let my condition control me. I don’t know what the solution is right now, but I’m hoping I find one some day so that I can fully enjoy all the benefits of living a healthier lifestyle.
That’s a summary of what’s going on. The following are links to more detailed blog posts if anyone is interested. I know that reading about other people’s personal experiences through this type of health issue really, really helped me as I prepared for my surgery and dealt with my recovery. I hope that in turn I too can help someone by sharing my story.
The two most significant posts are October 2011 – Details about my past surgery and general condition & November 2011 – The last Rant posts … the rest just go through my thought processes and emotions.
August 2011 – Learning that I have health issues once again
September 2011 – Trying to come to terms with having another surgery
October 2011 – Mentally preparing for surgery
October 2011 – Details about my past surgery and general condition
November 2011 – Learning about the unsuccessful surgery and what to do next
November 2011 – Dealing with the pain
November 2011 – Dealing with recovery
November 2011 – The Last Rant – Trying to just get my feelings out and move on
February 2014 – Another doctor’s appointment. Not surprised that the fibroids are still growing. Unfortunately there are no doctors in Kuwait who are qualified to do any sort of procedure to help them shrink or remove them. The main thing to watch out for is the fibroids pressing on other internal organs. So basically, I just have to wait and see.
I’ve been going to acupuncture to help with the pain relief. It’s been working. I know some people are skeptical about whether or not acupuncture really works. All I can say is I don’t feel as much pain — so I’ll keep going if it helps.
March 2016 – I finally went to see a doctor here in England. Aside from daily pain and discomfort, the amount of pressure I’ve been feeling in my lower abdomen has been increasing. I feel it a lot when I workout. I had been putting off seeing a doctor — it was finally time. I’ve had my initial consultation and started some lab work. I’ll be going in for an ultrasound in early April and then hopefully I’ll get to meet with a specialist. I have no idea what’s going to happen. I just hope there’s some sort of solution ahead.
April 2016 – I went for my scans. I was surprised that the radiologist wouldn’t show them or discuss them with me. He said I would have to go to my GP the following week for them. So, I went to my GP to get the results of the scans. It’s no surprise that they showed that there are several large fibroids. My uterus is more than double the normal size — the size you’d expect at 6-7 months pregnancy. As a woman who doesn’t have children/can’t have children, it’s tough comparison to hear. Moreover, as someone who likes to be active, the physical interference (not to mention the pain and discomfort), is really tough to handle. (I wrote a bit about it in this post.) The next step – wait for an appointment with a specialist to see what my treatment options are.
June 2016 – I can’t believe it took 12 weeks for my referral letter to come in! Nonetheless, it’s here … and my appointment is booked for August 1st. Fingers crossed they’ll be able to help me out. The pain is still getting worse — and to be honest, it’s mentally hard to stay strong during it all. The pain, discomfort, and bloating starts a week before my period … and continues for 2 weeks. Having only 2 weeks where I feel strong and healthy each month is really difficult to deal with. I try to stay strong and push through, but sometimes the fibroids win … and I hate feeling defeated :/
August 1, 2016 – What a joke that ‘doctor’s’ appointment was. I am so unimpressed with the NHS system. I can’t believe I waited for 5 months to be seen by someone who seemed more like an intern than a doctor — and who definitely wasn’t a specialist! I had to go through my whole health history again. When he asked about my pain/discomfort I told him that I was pretty much constantly at a 6/10 though during my period I’m usually at a 10 throughout. It seemed like he didn’t believe me. I asked to see the scans they took back in April, but instead of the actual scans all he had was a report. Finally, he did a physical exam — and, just like with all the other doctors before him, his expression changed. He couldn’t hide the look for surprise on his face as he said – oh, your uterus is extremely enlarged. To which I replied, ‘I know.’ Then said, no, really enlarged like 19-20 weeks of pregnancy. To which I replied again, ‘I know.’ What I really wanted to do was scream and say – do you think that I’m joking around here? Driving to this town with crazy roads, waiting over an hour to be seen for my scheduled appointment, and going through my medical history for the nth time? Do you think this is fun for me to exaggerate my pain?!?! But I didn’t.
After the physical exam, he started moving a lot faster. He left the room a few times to go discuss my case with another consultant. All I was thinking was, dude, if you don’t know, then why can’t I see someone who does know. However, the other consultant was busy with another patient, and it was getting to be the end of the day (not my fault, they were running over an hour late on all appointments), so I couldn’t be transferred to another doctor. He gave me several drug therapy options, but to be honest I don’t want to be on medication. I don’t want any pain relievers – I WANT A SOLUTION!!! Still, he wrote me a prescription for a couple of pain relievers, and then he said that I should start taking the mini-pill to help. However, for some reason he couldn’t prescribe that for me. Instead, my GP would have to do that … but first he needs to send the recommendation to my GP, who (I guess) would then contact me and then prescribe it for me. To be honest, I am not keen on taking the pill. I don’t like the sound of the side effects and if it’s not going to shrink the fibroids then I don’t really care for it. The second treatment option is called uterine fibroid embolization. This is a treatment option I heard about before in Kuwait. Essentially it involves cutting off the blood supply to the fibroids (or in my case maybe just one or two large fibroids) which will cause the fibroid(s) to shrink. However, before this can happen, he has to contact the radiology department. They will see when they have a slot open for an initial consultation to see whether or not I am even eligible for the treatment and then they’ll decide from there. Basically it means that I’ll be doing a whole lot of waiting with hardly any action for another few months. WTF?!
What I really wanted was a hysterectomy. However, given my past medical history and the formation of multiple adhesions, a hysterectomy is a not a straight-forward procedure for me … therefore, I will probably need to see a specialist. When the doctor said this to me I wanted to bang my head on the wall. Yes, I know I need to see a specialist. That’s why I am HERE! I thought that was what my appointment for today … but he said there was nobody qualified at that hospital do advise on my advanced case, so I would probably need to be referred to Oxford or London. Who knows how long that type of consultation will take …
So that’s where I stand – exactly where I was before. No new answers. I guess the next step is to wait to see how this embolization treatment plan pans out … in the meantime, I’ve got to do some research.
August 5, 2016 – I was in total shock this morning when I got a letter in the mail from the NHS with my next doctor’s appointment. Wow! They really were fast-tracking my case … however I then took a closer look at the date they gave me and it’s for the 7th of November!! That’s over 3 months away!! For the past 3 days I have been in so much pain that I have just wanted to be knocked unconscious until it was all over. I really thought that telling the doctor that I was in such constant pain would have prompted a more urgent response. I guess I should be thankful that this referral letter came so quickly (the last one took 12 weeks to arrive). Still, it feels like an absolute joke that I have to wait for that long … so what do I do in the meantime? Suffer I guess. I’m so annoyed, but I don’t want to hold on to that feeling. If the NHS isn’t going to help me out in a timely manner, then I’m going to have to figure out something on my own. I’m in too much freaking pain to just sit back and do nothing. Hope I can figure something out. In the meantime, here’s a blog post I wrote about the emotional struggle of dealing with all of this.
August 25, 2016 – My GP called me, which is unusual. She said that she was copied in to a letter that said I was denied an MRI. I was totally caught off guard. Why would I be denied? If the gynecologist said that he would fast-track me because my case was urgent, then why was I suddenly not even allowed the diagnostic screening? I was so annoyed. I told my doctor everything that had happened and that I was really disappointed and frustrated with the whole system, particularly when I was in so much pain and I was told that I was an urgent case. Moreover, had she not decided to call me, I would have never known that I was denied the MRI as I never received my copy of the letter. What incompetence!
September 2, 2016 – Out of the blue I got a letter saying that I have an MRI scheduled for later this month. How did that happen? I wonder if my GP made a phone call to someone to get it sorted out? In any case, I guess I’ll be going in for an MRI in a few weeks.
September 29, 2016 – I had my MRI done today. I had two different types of scans – a regular MRI of my abdominal and pelvic region and one done with a contrast dye. Of course the MRI itself is painless, but the amount of claustrophobia I felt was incredible. The nurse strapped me onto the table and started to slide me into the machine. I had to ask her to pull me out after just a few seconds. I felt total panic. After I caught my breath, I closed my eyes, and she was able to proceed. I was in the machine for about 20 minutes. Despite music playing through headphones the machine was incredibly loud. I had to keep reminding myself to relax and breathe — and to NOT open my eyes as I know I would have panicked. It’s amazing how the mind works. I knew I was safe and not in any pain, yet the idea of being in a tunnel and strapped to a table was tough to work through. Every once in a while the nurse would announce when the contrast dye would be injected into my veins as it would produce a cold sensation. Once it was over I could not get out of the machine fast enough! I see a radiologist next week to discuss the scans and see if uterine embolization is an option.
October 5, 2016 – I spent 4 hours in the hospital today. I went over my scans with the radiologist. No surprise really – multiple, large fibroids in my uterus. The one thing that did surprise me was that the largest one has grown to 13 cm in width and around 15 cm in length. The 2 other large ones are 7×8 cm in length and there are at least 7 more. I have to admit that it was difficult for me to hold back the tears. I hate seeing the images. The ultrasounds were one thing, but the MRI scans really brought it home. It’s hard. My closest friends around me are having babies while I have a tumor – yes it’s non-cancerous, but it’s still not a growth I would ever want in my uterus. Anyway. I can’t let myself dwell in that negative headspace because trust me, it can become a very, very dark hole. The next step is to try uterine artery embolization. Essentially what the procedure aims to do is cut off the blood supply to the uterus which will cause the fibroids to shrink. The next step is to wait for my appointment date. Since this is through the NHS, the funding for the procedure needs to be approved first and then the appointment will be set for somewhere towards the end of the year. I’m still trying to wrap my head around everything. I get really emotional when I think about it all — and the pain … there are no words 🙁 My only aim is to keep working towards better health so that if/when I go for the procedure I will be in a state to help myself through the procedure and more importantly through recovery.
December 1, 2016 – The pain has been getting worse. This time it kept me in bed for 4 days. I only moved when I had to. The pain is agonizing, the discomfort indescribable, the mental anguish … seriously, there are no words. I honestly don’t know how much longer I can put up with this. I don’t understand how I go from being healthy, strong, and upright to completely weak and crippled over night. It’s so frustrating.
December 5, 2016 – I finally got a date for my surgery!! Although I’m terrified of any surgery and dreading the recovery period, I am so thankful that I finally have a date. It’s not until mid-March, so I still have to wait … but at least there’s a date. I have something to ‘look forward to’. I’m relieved. Anxious, but relieved.
January 2017 – I feel like I’m having more bad days than good lately. It’s been frustrating because I’ve been feeling fatigued and bloated – in addition to all the pain. It’s been uncomfortable and no movement, particularly when it comes to my jiu-jitsu practice has been comfortable. The surgery can’t come soon enough.
February 2017 – There is no way I would have imagined the pain getting worse. Now even basic movements like moving from sitting to standing are painful. I have difficulty getting in and out of the car and turning from side to side in bed. It seems absolutely ridiculous. Sometimes I wonder – is it all in my head? I mean, of course the MRI scans clearly show the massive fibroids, but can they really cause this much discomfort. I guess I have to keep in mind that they’ve been growing since 2008 – so that’s 9 years of growth. I’ve been communicating with other women who have my condition; through their experiences I’ve learned that my symptoms are not unusual. It’s reassuring that I’m not alone. Not much time left …
March 2017 – I underwent a uterine emoblization procedure. The procedure itself wasn’t painful, but the 72 hours after that were excruciating. I did not react well to the morphine but I needed it for the pain. I also did not react well with the codeine, so I gave that up and decided I’d rather be in pain that deal with the side effects. I did take some regular pain killers though. I focused on rest. It took longer than I had wanted to get back on my feet, but I knew I had to be patient.
August 2017 – I went for a follow-up appointment with the doctor and they found that there are still several large uterine fibroids. The largest still being 10 cm. Although it had shrunk (down from 18 cm), it was still massive. Unfortunately, the embolization procedure was as ‘successful’ as it could be in my case so the doctors basically said there was nothing more they could do for me. WTF? I was upset.
September 2017 – Annoyed with the NHS, I decided to go for some private check-ups. I went for a complete health check up. I’m talking head to toe overall health check up, testing my blood chemistry, my eyes, my ears, having a mammogram … the works. I met with a new gynecologist and was sent to have some ultrasound scans done. Through the ultrasound imaging they found that my left kidney has some damage. This is due to the pressure from the large fibroids. I was told to monitor the condition and go for scans every few months to make sure the damage isn’t getting worse.
November 2017 – Over the past two months I have been to 2 different gynecologists and 3 different doctors and and several scans. It has been exhausting – physically and emotionally. The bottom line right now is that I still have multiple fibroids and while they aren’t growing at the moment, they will grow in the future … of course that was not news I wanted to hear. In addition there’s the kidney damage that I have to monitor. I’m trying not to think too far ahead and just take things in stride. My overall health, aside from low iron and low vitamin D, is fine. Another positive note is that I do not feel as much pressure or pain as I did before the surgery, and that is definitely a big win given how much pain I was in earlier this year. Let’s see what the new year brings.