Hi
I am Claire and I am 33. I hope by writing this blog you can learn a little bit
about endometriosis and also hopefully (fingers crossed) the positive affect
this treatment will have on my condition.
I
will begin with a bit of background about me. I hit puberty very early, at the
age of 10 and by the time I reached secondary school I was forced to have up to
a week off school each month due to the pain, sickness and diarrhoea I would
suffer when I got my period. The pain was so bad I would not be able to
walk due to the dragging sensation down my thighs and I would bleed heavily for
up to 5 days. My GP prescribed me Ponstan, a strong painkiller, which I would
take a few days before and during my period. As a result of numerous trips to
the GP he then prescribed me the pill. This seemed to help. I would still bleed
heavily but the pain was bearable and I could take over the counter painkillers
as opposed to ones that look too large to swallow!.
I
continued on the pill throughout my teens and my twenties and then in my late
twenties I began suffering ‘blind’ migraines. I would literally lose my
peripheral vision in both eyes, the first time for two days. Following numerous
tests they decided I was at high risk of a stroke and had to stop taking the
pill. This did not bother me as I knew I needed to come off it as I was
approaching ‘that’ age and wanted to start trying for a family. My cycle
immediately returned, so I thought that was a positive! But then gradually all
the symptoms I suffered prior to going on the pill returned with a vengeance.
My GP told me to take anti inflammatory’s and painkillers and basically
get on with it. I had not been taking the pill for 3 years, and my then partner
and I were not using protection but I did not fall pregnant. This worried me.
It seems you spend so much of your life hoping for your period as you don’t
feel ready for a baby but then when faced with the reality that it is not
actually that easy to get pregnant you naturally wonder if this can actually
happen, is everything in ‘working order’ and what if it can’t happen.
I
then began bleeding in between my periods. Nothing specific seemed to trigger the bleeding. I was drained emotionally and
physically. It had an effect on my whole life.
I
finally got referred to a gynaecologist who said I would need a laparoscopy to
see what was going on. I had this last October when, at 32 years old I was
finally diagnosed with endometriosis. I didn’t have a clue what this was. They
told me that my fallopian tube on my left hand side was stuck down to my back
with adhesions and there were other ‘bits’ floating about. I was devastated as
I thought the operation would ‘cure’ me when in reality the surgeon did not
remove any of the endometriosis as it would have meant removing my fallopian
tube. I had hope for my follow up appointment as I thought there must be
something they can do. I was told I had two choices; get pregnant or be put
through the menopause. I was then told that it was unlikely I would be able to
get pregnant without their assistance and would need help. Double whammy! I was
suddenly faced with not only the condition and all that comes with it but also
the fact that I would not be able to conceive naturally. I definitely did not
want to be put through the menopause but I did not feel ready to face fertility
treatment either so what was I left with? To continue to suffer? Yep, that was
exactly what I was left with.
I
remember my next period following my laparoscopy I just sat and cried. The pain
and bleeding was horrific I felt very low and depressed. I know it sounds
dramatic but any fellow sufferer will relate to the draining effect it has on
your whole life. I have pain most days and bleed or have ‘spotting’ for more
days of the month than I don’t. I may as well take shares out in Always! My
symptoms have gotten worse since my laparoscopy I now get pain and bleed each
time I exercise, bleeding that can last for days. I refuse to allow it to stop
me as my depression is worse when I don’t exercise, although some days I do
have to listen to my body and take it easy. I have an appointment with a
specialist in a few weeks – not sure how I feel about going back as I dread
having another laparoscopy as I was so ill following my last one, but suppose I
will just have to wait and see what they say this time.
Speaking
with Phil has given me hope! The stories I have heard have made me feel so
excited and positive about this treatment. I cannot thank Phil enough for
allowing me to trial this process - I am willing to try anything! I will keep you
up to date with my sessions and how they make me feel and if they do make any
difference to my symptoms.
Had my first session with Phil today. I was so nervous as I was already in pain and bleeding as I did an exercise class last night. I didn't know what to expect but Phil was fantastic and I felt completely at ease. He explained exactly where the pads were being placed and why and also the feeling I should get when the treatment began.
ReplyDeleteIt was a strange sensation at first like a tingle but as I relaxed I actually enjoyed it! I am feeling very positive about session 2!. I am not sure whether it was due to the treatment but my bleeding became lighter throughout the day and I was not as uncomfortable. My next session is Wednesday and I cannot wait.
After a particularly painful day on Sunday, I was very much looking forward to today's treatment!. I even got up early and went to the gym beforehand! only 20 minutes on the stepper but better than nothing.
ReplyDeleteMy second session was instantly more relaxing as I knew what to expect. Phil placed the pads in a number of different places this time, one being the top of my left leg where I tend to experiance a lot of pain so will be interesting to see whether this makes a difference.
It is now 5pm and I have had no pain today! and no bleeding!. I usually bleed following exercise so fingers crossed!. My next session is Friday so will keep you updated.
I had my third session on Friday morning. I had no pain or bleedin since my last session (Wednesday) so was eager to see the results of my third!.
ReplyDeletePhil took the machine to a higher setting on this session and I could really feel this working the muscles, slightly weird at first but I got used to it. I felt I could push myself a little more as I did not have the pain that I had on previous sessions.
The tingling sensation lasted a lot longer after the treatment this time. There was no pain as such but I did feel a little discomfort but i think that was more to do with the fact I had worked the muscles harder not the endo. Friday was a good day no bleeding and I felt so full of energy!.
Saturday morning i woke up and felt as if I had done a big abs session in the gym, particualrly down my sides and my tummy was not as bloated as normal - which I loved given that I was due to wear a very tight dress for a christening that day. I decided I really would put it to the test and went to the gym and did a HIIT workout, invlolving a lot of jump squats, weighted squats etc which would normally trigger my bleeding and pain. I attempted to finish my workout with a bit of ab work which I had to stop as it was causing me pain, but in hindsight I was probably pushing myself a little too far given my treatment the previous day is equivalent to 330 situps!.
Saturday was another good day - no bleeding! which made me extremely happy! I did not have pain it was more of a feeling of discomfort in my lower pelvis nothing like I would have normally after a workout and I did not need to take painkillers!.
Sunday I was again pain free and no bleeding I thought I was on a role however, this morning I have woken up feeling bloated and in some pain. I am so tired I think I could fall asleep at my desk but I think that is the weekend catching up on me. Next session tomorrow so hopefully will ease the pain again.
It is now Thursday and I had my fourth session on Tuesday. I have still had no bleeding and I have managed to go to the gym Tuesday night and I am due to go again tonight!
ReplyDeleteI haven't had pain as such but I have had discomfort. However, given that my 'time of the month' is due in the next few days this is a complete contrast to the pain I am usually in around this time. I would normally be taking painkillers up to 3/4 days before I am due my period as the dragging sensation and pain would be too much to take. I have not swallowed one painkiller as yet!
I have felt exhausted and bloated. I do think that this is due to the fact my period is fast approaching and I do become very bloated and feel very low and weepy around this time.
I think we must have worked different muscles as I have not felt the affect as much as my previous session. I am slightly weird in that I like to feel the 'pain' when muscles have been worked as I then know it is working.
We definitely established that I had a stronger side as I could not reach the same settings on my left side as I did on my right which coincidentally is where the majority of my pain is.
My aim is to get the settings higher tomorrow - so fingers crossed!
So today is Monday and I have managed to go to the gym three times since my last post! I had my fifth session on Friday and, although, I had some discomfort Thursday evening following my gym session, this was not enough to take painkillers and still no bleeding!.
ReplyDeleteWoke up on Saturday shocked that I had still not got my period and still no pain, had all other PMT symptoms (crying at anything remotely sad! craving chocolate :) ). I went to the gym, still no pain. Not a great session but that was probably as a result of the amount of wine I had consumed on Friday night!.
After a great nights sleep on Saturday night I woke up bright and pain free again on Sunday. I text Phil to tell him as I could have literally cried tears of joy! still no bleeding!. So, I went to the gym again!. This time worked a lot harder, jumping squats, burpees etc. Usually, if I was due my period I would be out of action for nearly two weeks due to the pain and bleeding.
I really cannot thank Phil enough I hug him every time I have a session because, apart form the fact he's a lovely person, he has brought me so much joy by allowing me to have this trial and to that I will always be thankful. I shall write again tomorrow as I had my sixth session this morning and still no signs of my period! I feel extremely positive :)
Sorry I haven't posted I have had limited access to the interest due to phone problems!
ReplyDeleteMy last treatment was a week ago, I finally got my period last Wednesday so it was delayed slightly (I was not shocked as I had read some of the other ladies blogs who had noted it affected their cycle slightly). The main difference I noticed was the run up to my period! I was not filling myself full of pain killers days in advance and my bloating was not as bad as it normally would be.
I can't lie my period was awful I was in agony BUT the need for pain releif was reduced. I would normally be clock watching, waiting to be able to take another dose but I managed to keep them to a minimum (not sure if that was me having my own mental challenge but it worked!).
I had to cancel my session on Friday due to the pain so was really looking forward to my session this morning. I had not managed to go to the gym at all last week so this morning I went for a swim prior to my treatment, only half an hour but better than nothing!. I woke with some pain on my left hand side and felt generally sensitive in my pelvic area.
I was extremely disappointed with myself in today's session. I could not get the machine as high as my last session and I felt very disheartened - to the point where I was a little weepy driving to work as I had been feeling so positive after previous sessions. Phil did tell me not to be so hard on myself as there are bound to be times when I am more sensitive than other's especially after my period.
I am also conscious that I am coming to the end of my treatment as I am on session number 7 which is also causing me some anxiety! My next session is Wednesday morning so I am determined to really push myself! and hopefully the sensitivty and pain will have gone.
I had my eighth session on Wednesday morning. My mother suggested I didnt go to the gym the morning of my session to see if this made a difference to the level I could reach, (mother is always right!). I did in fact get higher than my previously disappointing session and I was not in any pain!.
ReplyDeleteImmediately after my treatment I travelled to the Lake District for a two night break. As I would normally do I took a supply of pain killers and sanitary towels 'just in case' as I never know when it will strike! I can happily say I did not need any of it! no pain no bleeding!.
I had my nineth session this morning and Phil assures me (although I think he may say it at times to make me feel better about myself :) ) that I managed to get a higher number on my mid section. I couldnt get quite as high on my back or sides but still higher than last time!. I have been completely pain free and no bleeding since my last treatment which has been amazing. I have however been rather lazy of late and have not been to the gym in a week! So I am getting back into my routine from tonight so this will be a real test as I have had more or less complete rest (apart from the odd walk!) for a week now.
I am sad to say that Wednesday will be my final session of the trial, however, I do plan to book in further sessions as it has made such a difference to my quality of life. I do not know what it is doing inside but it is doing something and it is amazing. Medical trials desperately need to be carried out as although we will never be cured, this machine has hugely improved my quality of life.
I had my final session on Friday :( I was determined to get the dials higher than I have ever done previously and I did!.
ReplyDeleteI have had a lot of stress in my life the past few weeks and this would normally cause me to be in increased pain and bleed and I have had nothing!
I went to the gym yesterday and did a big leg session (first one in months) and a swim and guess what? .... no bleeding or pain! I cannot believe the difference this machine has had on my quality of life.
I do intend to continue the treatment, sadly not at the level I have been having as I simply cannot afford it, I will struggle to afford any at all but I would rather go without other things to pay for the treatment due to the huge difference it has had on my life.
I cannot thank Phil enough for allowing me to be part of this trial I could literally cry tears of joy when I think of how low and in so much pain I was in prior to beginning this trial compared with where I am now.
I hope that one day soon the medical profession will recognise that this machine has made a difference and carry out the necessary trials so that all endo sufferers can have the option made available to them on the NHS and not have to pay for something that improves their quality of life.