I have wondered for a long time whether I should write this, but have decided why not, if I can help someone else, or just let them know they are not alone it will be worth it. Here is my PCOS & Endometrial Hyperplasia journey to diagnosis.
Six years ago I was finally diagnosed with PCOS and Endometrial Hyperplasia, It was a horrendous time, as I was in so much pain, I had been bleeding constantly and I don’t mean a little spot I mean I was flooding on and off for eight weeks, I had been to my doctor four times, and seen three different doctors, as the first one tried to suggest I was pregnant and send me away for two weeks with condoms!! Now ladies you and I all know, when you are in this state the last thing you want is a man coming anywhere near you! I went back after two weeks, where I argued to be Sent for a scan, once again this female doctor sent me away with Norethisterone and said: “take that, it will probably stop it, any more problems come back and see me.” I took this and within three days the bleeding was back worse than ever, so I returned to the doctor, bearing in mind this was so bad I could not work so had to keep being signed off work, the boss I had at this time was completely unsympathetic – I believe she said “as you have moved desks you are closer to the toilet and you must be having to wear nappies!”This manager also against policy kept asking for copies of all my certificates and making out to the company nurse I was not doing my job, yet my feedback and what was recorded in the HR system was completely opposite, she was also constantly dragging me into meetings, or phoning me at home and basically bullying me, I was sent twice to a company doctor, on my second visit he was very angry they had sent me to him again and was appalled as to how I was being treated,so I had to take advice from a solicitor, yes whilst all this was going on! Some of my so-called friends at work were not being very friendly, or supportive so It was a really tough time. And I was once again back to the doctors to have a battle over what was happening! I saw a third doctor, whom I stated that I had private health insurance could I see someone, she told me to take more tablets for another week, she would set up a phone appointment and take it from there if this had not settled, she told me it was probably PCOS and I needed to lose weight! As you can guess there was no change, I was still bleeding heavily and by this point, I now looked the colour of a corpse! When the phone rang she couldn’t even remember what the appointment was for and had another Louise’s details up! Finally, she reneged and gave me a letter so I could finally go see a Gynae Consultant at our local private hospital!
image courtsey of Pinterest.
I handed the letter my doctor had written, which would make you scream, I won’t tell you all that she said, but she apologised for wasting his time as she had already told me it was probably PCOS and I had to lose weight, but I insisted on seeing someone! When my consultant one of the top british Gynae experts in the UK heard how long I had been bleeding for, he read the letter and actually screwed it up in front of me as he was livid at how I had been treated, and insisted I had an internal scan immediately, he then discovered.. yes I had PCOS which he believes I have had since I started my periods age 11, I explained to him I had on many occasions through my school years and early 20s been to GPS as never had a period on time, I would suffer greatly from pain and not always be able to go to school or college, and my weight could be erratic if I was not exercising at least 3-4 hours a day, I told him how My GP told me I had a five week cycle ( which he laughed at and said rubbish), that the pill would help me etc. He also confirmed that I also had an enlarged womb to 23 cms and a polyp the size of a grapefruit and I would, therefore, need surgery. He also explained that PCOS is hereditary and so are polyps.
Within two weeks I had surgery and felt and looked human again, sadly though the pain returned and so did some bleeding, where I was once again put on Norethisterone as my womb was still enlarged! This was hell as Norethisterone and I do not get on at all, I was so ill with headaches, horrendous periods the pain was excruciating, and I was on holiday which you can imagine was ruined, everything hurt and my body was bloating up like a balloon, so I went back to my consultant. He re-scanned me and could see that my womb was still enlarged and not coming down, he stated I would need to have a Mirena coil inserted, and this would need to be done under general anaesthetic.
Image courtsey of Pinterest
The operation went ahead, and I was once again signed off work for a week, within 24 hours, I was pacing the room, I was on my bed on my hands and knees, not sleeping as I was having contractions, every 10 minutes, this torture went on for two weeks, when I got to see my consultant, he said that it sounded like my coil was trying to expel itself, but it was early days, that my biopsy results revealed there had been slight changes and that this really was my last option as I was too young for a hysterectomy. He asked me to bear with it. As the months went passed it did ease, to just getting contractions for about one week either side of a period. After two years of this I suffered 48 hours of contractions, I was sent for scans and x rays as they had trouble locating my coil, they found that the coil had moved around my uterus, though I felt so much better, my boobs halved in size as they were so swollen and painful, my weight came down and no more contractions! And I was no longer an emotional wreck, as it made me so emotional either tearful, or I could go from 0-100 and lose my temper over the simplest things! That is not me. I am normally a very easy going, happy go lucky kind of girl! I was also put on Metformin – due to women that suffer with PCOS we do not break down fat in the way a typical healthy female does, hence why weight is such an issue for a PCOS sufferer and as my consultant stated “its a vicious circle” hence to say I came off Metformin as these made me so ill.
My consultant said the lining of the womb was decreasing, And as I was feeling so much better maybe the amount I was now receiving from the coil and where it was, was working for me, he also told me I did need to realise that my condition is serious and how Hyperplasia can lead to cancer of the womb, due to my PCOS and this, he did tell me it would be near impossible for me to become pregnant naturally, I would need a lot of help, and the chance of me carrying a foetus would be very very difficult. I knew he was trying to gently tell me, the outlook for me being able to have a child was not likely. I have to say, to deal with this I just threw it to the back of my mind, when some of my friends started having children, yes it’s tough, and I am not gonna lie to save myself I sometimes keep my distance. I just get on with it though and ended up getting a gorgeous fur baby instead! Though of course I am sad about it, and it does every now and then slap me in the face, ( like being sat in with all these happy lovely couples having scans and baby clinics whilst you sit waiting to see your gynae consultant worrying about what they are going to do to you, and has it changed, and at worse do you have cancer!) I just deal with it at that moment, and then carry on! When you accept that is your situation, you don’t become bitter well at least I am not, I just go about my life and don’t think about it too much. I have two gorgeous goddaughters and my dog, and lots of friends with lovely kids and for that, I am very grateful!
Until Three years on I was pretty ok, the odd blip but all manageable, I changed my diet to as sugar free as possible and lost 22lbs, and had upped my fitness so was feeling great, but then this past year there has been some very stressful events and sadly contractions and irregular bleeding started again but hit a crescendo in November, My stomach swelled up and I looked five months pregnant, and I was bloating out again, I could tell something was wrong so I went back to my doctor immediately, she said it felt like the hyperplasia was back and she would refer me to our local NHS hospital. I had an appointment for the first week of January, whereby a consultant put me on the mini pill until I was cleared for surgery, as she would be doing another biopsy, removing my old coil and inserting a new one! Due to an influx of hormone again, I was poorly on and off for a few weeks before it settled down.
I went in for my operation four weeks ago, I won’t go into the whole ins and outs but when you walk into theatre – oh yes I had to walk in! There were eight people in the theatre, I had three anesthetists and the head one is freaking out and basically a crash team as they think due to your BMI being a bit on the high side ( even though the head of Anesthesia cleared you when you attended his clinic) you may actually kick the bucket on the table does not do much for relaxing you!! And when I am nervous I make jokes! you see the lights they have are like something Nasa would use to communicate with aliens! so me being me said ” I don’t know who you are calling up there, but I don’t think they will answer!” those that know me can see the face I was pulling when I said that and how even laugh at how they were all commenting on how nice I smelt and they loved my perfume! Well if I did kick the bucket at least I suppose I would be a pleasant smelling corpse! sorry dark humour but I needed to try and calm myself down! In fact, as the senior Anaesthetist was freaking out because I couldn’t breathe, because she put the oxygen on me wrong, she crushed my nose and then, of course, my heart rate was going up, she was freaking me out and there were these big NASA lights looking at me!! And breathe Louise, I was so glad when that anaesthetic kicked in!
I can happily say there were no issues, it all went to plan, and I woke up chatting away! other incidents went on that was typical of me but this will end up sounding like a comedy moment again so I will get right back to the serious stuff!
My tummy is now only just starting to go down thank goodness, but the past two and half weeks I have once again had it trying to expel itself, so I have had contractions from hell, and my first period has been horrendous too, today it seems to be easing back a bit! And I am now seriously hoping it will settle down completely, I am going back onto sugar-free as I do find diet does really help and seriously considering going vegan but mm I don’t know, and continuing to take probiotics especially as I was given a heavy dose of antibiotics after. I am still waiting on my Biopsy results as apparently there is a backlog, here is hoping it is going to be ok!
I truly don’t know how it’s going to go this time, it has not been as bad as the first time, and it does feel different, I am not as hormonal or bloated, thank goodness. I am hoping the contractions completely subside and my periods return to a manageable level. It’s just all unknowns, it’s conditions that I live with, I try to help myself in any way I can, but everybody reacts differently and mine is so unpredictable. I can say most of my friends and my mum have been fantastic, what does annoy and upset me is there are still so many women out there intolerant to it, they truly do not understand or want to understand as they have never had a problem so to them this is all rubbish. I really really wish it was, as trust me trying to lead a normal life never mind coping with all the pain, the misery and the embarrassment is so hard!! Why can’t women just support one another?
It’s currently a daily battle and one I will not give up on, I keep my sense of humour and carry on! What I would like to say though is ladies, be kind to one another, and remember just because you are ok doesn’t mean everyone else is. For those of you suffering keep fighting, and if any of you have irregular bleeding, or any changes in your cycle, or new issues, get to your doctor immediately, don’t be fobbed off, and always ask questions! I can say that the level of care, and what is now available now is so much better than six years ago, but it still has a long way to go and I just wish more research was done. The staggering numbers of at least 176 million women globally suffering hormonal and endometrial issues are immense, and I hope the big pharmas look to research into these conditions for all the many sufferers. And help give us our lives back!
** 10th June 2018 **
I thought I would do an update on how things are going and what is working and helping me
Currently, two months on and the pain has mainly subsided, it has moments around my monthly cycle, but most of the time I am now pain-free, which is a wonderful feeling!
So how did I get to this positive place, well I made some lifestyle changes, tried some new products and everything has been coming together, so let me share with you what has been working for me and making all the difference?
1.Firstly I have joined weight Watchers, I tried weight watchers a few years ago and It didn’t work, but a colleague at work has been doing it and we have had similar issues, she informed me how its different now and a Flex plan. I decided to give it a go, and they were doing a discount sign up, they are currently offering one month free. I have to say I hate going to weigh-ins, as those of us that have PCOS know the vicious circle, you stick to a diet religiously and you have seen those scales stay the same or go up, and you get the look, and what are you doing wrong? I find the classes a little cringe, and have seen people treated in not a positive way! Last time as well as now I have done it with my mum, last time she kept losing and I stayed the same, it was so frustrating, but I am so glad I decided to try again as this new Flex plan is working wonders, and just over two months in I am One pound from two stone lost! YES!! I am so happy, I am finding it so easy, and enjoyable. I do not got to class I do it all online, but I do connect with others through the App, I can monitor everything, even my activities and my Fit points! which keeps me in competition with myself! Beating myself always seems to inspire me and spur me on more! I started out on 25 points, and 50 fit points as my weekly target, I am now down to 23 points a week and way surpassing my 102 weekly fit points! I would certainly recommend giving it a go as its so easy, you can still go out, enjoy a couple of G&T’s but mostly learn to portion control, eat a balanced diet, and enjoy a healthy lifestyle and still have fun! I am on there as Louloulouisey if you wish to connect via the app?
2. Exercise has massively helped me, and that to me has been with walking, and utilising my fitbit. I started off walking a mile in the morning and half a mile in the evening with the dog, 5 days a week, now we cover 3-3.50 miles a day on our dog walks 5 times a week. I just went to Amsterdam and was happily walking 5.5-6.5 miles a day in 28 degree heat, that would have not have been possible two months ago. The positive attitude the walk gives me and it really sets me up for the day, as I know I have done this big walk I can focus on other things. I always make sure every hour I get up and walk, a colleague and I go for a coffee/drink but before we buy it we walk a circuit of all three floors which is about 1000 steps first. With my fitbit, I join with another colleague challenges she sets, and was brave enough to set up my own this past week, and was amazed I actually won and came in with 57181 steps! So my advice is to start small and work your way up if you want to join my Fitbit I am on as Louloulouisey L.
3. I really wanted to do something for the environment as due to bleeding for so long and being so heavy and with all the talk of the impact of plastic on the environment an opportunity came my way where I was gifted a pair of seamfree full briefs by Modibodi to try. So let me explain Modibodi creates protective Leakproof underwear & swimwear for periods & light bladder leaks! Their pants have a lining that contains modified technology so can hold up to 15ml about Two tampons worth. it absorbs and locks away fluid, wicks moisture and fights odour. I have only just tried these as wanted to see how I would get on with my period. I only received one pair, so could only use for one day, wash and then use again on my third day. I have to say I was hugely impressed, being cautious I didn’t try them on my first day outside the house, but they were so comfortable and light and no leakage I thought ok, I am going to take these to Amsterdam with me, I did and wore them all day on my third day and like before no leak, no issues and felt as clean and as light as a feather. I also loved the fact that I was saving money and helping the environment. they start from £18.00. And I think are a fantastic invention!
4.Vitamin B – due to my diet I have increased my vitamin B I eat a lot of eggs, fish and vegetables, and an increase in Vitamin B has made also a huge difference in my mood, my PMT Symptoms and my general well being, check with your doctor first but I would highly recommend taking supplements until you balance out your diet and receive the nutrients you need.
5. Magnesium Oil spray – this is a game changer, with PMS, PCOS and Hyperplasia bad sleeping patterns was a regular occurrence, every night now I spray the bottom of my feet and that’s it I am off, and now managing to sleep 7-7.5 hours straight! A few months ago this was unheard of, I have also tested it out on my mum, as she is normally up 3-4 times for the loo, well she has found if she gets up, it is only once! Good sleep means happy and healthier you. We buy Holland & Barretts own Magnesium spray and seriously try it, and let me know if it helps! Currently on offer for £4.99
6. Mirena Coil – two months in I am so glad this has settled down, I think with my combined efforts this has really helped the hormone kick in, and this time it is actually working for me and helping. Last time my weight kept going up, I was always suffering horrendous contractions, my boobs were huge and sore, and I was an emotional wreck, I could unhinge my jaw and annihilate someone one minute and then sit bawling my eyes out at an advert! This time I can happily state I am completely balanced and feeling great. Last time I would never have recommended this but I most certainly will this time, my only advice is even if you have had children, try and have it inserted at a clinic where you can have gas and air, or can be knocked out as its not for the faint-hearted, and I know women who have passed out and said its worse than labour! I thankfully was knocked out!
I really and truly hope my update has given you some ideas of new things to try, and that any condition has to be fought and can be trial and error, but it’s your body, take control, you control the condition as much as you can not the other way around. Anything else I try, discover or hear about I will share with you! Lets not be shy or ashamed and never stop talking and sharing about this.
If any of this affects you, or you know someone that it does then please do reach out to the PCOS awareness association and the PCOS UK organisation, and always see your GP
And if you suffer from Hyperplasia you can reach out to the following support group
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