Chinese physical therapy

[emmaibiza]

Just wanted to share some positive news with you all.

I have been so poorly for the last 2 years. Unable to do much apart from work part time. I was in constant pain. I've been so bad that I have not been on holiday for over 2 years, usually we have about 3.

I had widespread Endo removed in March 2015 which was on my bowel and bladder also. I felt no benefit for the excision surgery and my gynae consultant found I had interstitial cystitis a bladder condition. As I was feeling no better I had a mri which showed I had adenomyosis in both sides of my uterus. I had surgery just over 2 months ago and my gynae consultant did a presacral neurectomy, which is cutting of the nerves to the uterus. No Endo had grown back but he could see where it had been removed the year before.

I think the only next step is hysterectomy if this surgery wasn't a success. 3 weeks ago I was feeling no better at all. My stomach pains were awful and my back constantly hurt. I have asked for physio lots of times to my gp but he said as lower backache is probably due to Endo, IC and adenomyosis that physio wouldn't help.

I have no children and I don't want a hysterectomy as 32 and no children. I may not be able to have children but I would like the option to try.

I have tried acupuncture before a couple years ago and I found it pointless. It didn't help my pain and I was left with needles in me in a cold room for ages so I never bothered to go back.

I have been taking 8 cocodamol and 8 tramadol every day for the last couple of years, including Diclofenac and morphine when the codeine and tramadol dont work. I also have amitriptyline and lots of other meds.

I was fed up 3 weeks ago as had so much surgery and never feel any better.

I was looking to pay private for a physio who was trained in gynaecology and bladder but I couldn't find much where I live but I did find a British man who is trained as a Chinese physical therapist and has studied women health including gynae and ivf so I spoke to him on the phone, almost interviewing him to make sure he did know what all my conditions are.

I had my first appointment just over 3 weeks ago and I'm amazed at how much better I am feeling.

On my first visit he asked lots of questions and when I lied on the bed he said my pelvis was lower on one side. He said it can take many sessions to get the pelvis straight again. He did lots of pulling and tugging and he did acupuncture, massage, tens machine, magnetic treatment, cupping. He is so good and the price is great it is £40 a session no matter how long the session lasts. My first 2 visits were over 2 hours and my session yesterday was an hour and a half. I feel like I've had a massive workout the day of the treatment and the day after but it's so good afterwards I feel brand new.

I don't feel half as bad as I have for the last few years. My pelvis is now straight after 3 sessions which he said is really good as it some times takes many more sessions. He said the pelvis not being level will put lots of pressure on my back and gynae area.

I just wanted to share some positive news for a change and anyone who is struggling so much every day despite the surgery should try Chinese physical therapy but make sure they are gynae trained.

I'm now down to 4-6 codeine a day 1-2 tramadol a day and 1ibrouphen. I've cut down so much in the last couple of weeks.

I am not fully better and still have pain but it's not constant as it was before.

Xx

[TinaBSheffield45]

That's brilliant. Glad to hear you have found some relief, may have to give it a try.

[emmaibiza in reply to TinaBSheffield45]

Thanks hun. I always write on here when I feel down and in pain so I thought it is nice to share some positive news. I had the coil fitted during my last surgery so I think that is also calming down which could be helping.

The Chinese physical therapist is fab i would 100%recommend everyone to give it a go but make sure they are trained in women's health as others I have tried haven't helped.

Let me know if you do try it and how you get on hun.

Xx

[Charlie-36]

That is amazing what a relief to find something( not meds) that actually make a difference to pain levels , I've started pelvic physio have only been doing deep breathing letting the whole pelvic floor relax and some hip flexor exercises, they are going gentle and gradual as just a small amount of physical examination cause alot of pain..I hope you continue to have more improvement you have had enough surgery by the sounds of it!xx

[emmaibiza in reply to Charlie-36]

Thanks lovely it is such a relief to find something that is actually helping.

I know what you mean with any kind of physical examination being to painful. My groin area was so bad I haven't let him do acupuncture there until yesterday and even though I was trying to relax my stomach was not playing and I was just stiff. I think that is going to take more time until I can relax when someone is pressing on my lower abdomen, years of pain has left me scared of anyone touching and pressing there. He did make me feel my groin area to feel the huge lumps which he said was knots so he's told me to massage there everyday. I was nearly crying it was so painful but no pain no gain as they say.

I hope the pelvic physio gets easier for you hun. I did get some of them exercises to do while I was in hospital for 5 days but it was so painful after the surgery I struggled and never did them once I was home.

Take care xx

[Charlie-36 in reply to emmaibiza]

Thanks babe I haven't been able to work for last 18 months so well done to do you for keep working, I was a support worker so it was just too physical.. I know it's my groin that gives me the most pain the muscle has shortened apparently so the hip flexor are meant to strengthen it..it all started after a lap to remove a chocolate cyst and adhesions and just got worse and worse so debilitating, that's it no pain no gain just gotta be patient and not get too negative about it all! I've given up with any hormonal treatment it's always just made me worse!

Good luck with it all and hopefully you'll be able to go on a holiday soon ( Im the same no holiday for 2 years it sucks!)xx

[emmaibiza in reply to Charlie-36]

Its awful isn't it hun. I know exactly how you feel. My life was turned upside down when a gynae did laser treatment when I was first diagnosed in 2013. He made a right mess of me. I went from having horrendous periods and 3 days of absolute agony a month to being in constant pain and slowly it's taken over my life since then, the last 2 years being the worse. I use to be a party girl going out all the time but I literally push myself to go to work for 24 hours a week then spend all my time at home recovering. I haven't had a glass of wine for a year and a half or even touched alcohol for that long and I use to love my weekends having wine with friends. Luckily my boyfriend is very supportive, we have been together 10 and a half years. My friends couldn't believe how much I changed from being so busy all the time to literally staying in all the time.

I work for nhs so I've been very lucky that my boss is very good and let me do flexible working so on a good day if I could work 8 hours I would and if I couldn't work one day I could stay home. As long as I did my hours in the month they was supportive. Not the same story with the higher directors of the trust but luckily my boss doesn't want me to lose my job so she helps me out with them.

Like you I've not had hormone treatments for a long time as allergic to the pill, tried zolodex which was horrendous I turned into a crazy person. The coil is still up and down for me the first 2 months being awful but I'm glad I stuck with it as it is calming down now. I felt like I was going to give birth to it at first my body was rejecting it. What hormone treatments have you tried hun?

The groin pain is awful isn't it, the pain yesterday from a little needle going in was awful. I couldn't believe the huge lumps I had there, no wonder I've been in so much pain. I bought some oil yesterday so I can gently massage there. Can you feel any big lumps? If you can manage to gently massage it yourself with a bit of oil give it a try I felt awful yesterday after it but 24 hours after is so worth it. I think it's better doing that yourself as you can be as gentle as you need to be.

I really hope you start to get some relief. Like you I've tried to stay positive over the last 2 years and about 4 weeks ago I lost every part of positivity I had, thinking I was going to spend the rest of my life in pain. Think that was my lowest point till I pushed myself to try something new and I'm so glad I did.

Keep me posted with how you are doing hun. If you ever feel fed up just send me a message I can relate to how you are feeling xx

[Charlie-36 in reply to emmaibiza]

It really is awful and just changes everything. I'm lucky to have a very supportive husband but it does take its toll. I'm sorry your gyne did that, it's just terrible isn't it you go for the surgery and have no idea it will cause so much pain and just completely change your life! I know I haven't been able to have a drink since last Christmas as when I do I start retaining wee and then it just gives me cystitis symptoms so I completely know what you mean there I would just love a few drinks it's so frustrating isn't it.. like you I used to be so active used to love shopping and walking but I just can't do it anymore I've had some very low times too.

That is brilliant about your work, that's my worry as I just can't be relied on you can't always predict when your gonna have a bad day can you it would be ideal to work from home but I've done support work all my life which I've loved and I'm just not too academic so I don't know what else I'm gonna do, hopefully I can get more stable and at least do a bit of part time work as long as not too physical..

Oh God I had the zoladex last year for 3 months it made me completely mental I was so depressed on that stuff and it just seemed to give me more pain that stuff is evil! Just recently tried cerezette I felt quite low and then got a uti which ended with me in a and e with acute urine retention it was soo painful! I think the hormone change caused the uti so I stopped taking it, apparently it's quite unusual to get urine retention from a uti so I'm thinking there's something going on with my bladder...it was such a trauma as the 2nd catheter they put in I could barely wee out of it turns out it was put in incorrectly! I did have the coil for a few years before my lap and I got on okay with it but I couldn't face having another one put in at the moment. I hope you get on with it now its settled a bit for you , I think it does work for alot of people so fingers crossed it helps you..

Sometimes I have felt it all being a bit lumpy I have tried doing a bit of massage but think I need to get a bit braver!

Awe thanks babe you can send me a msge anytime too, it really is hard thinking is this what life is gonna be like forever now, but things don't always stay the same do they so I keep telling myself this is just a blip! Hugs to you xx

[LadyKate077]

Great positive news xx

[emmaibiza in reply to LadyKate077]

Thanks hun xx

[poppy75]

I'm so pleased you've found something that's helping. I've read your posts before and you've had a hell of a time. I also have been worse since my last surgery. It's absolutely gutting isn't it? You put yourself through that not expecting it to become worse!

I'm unable to work at the moment so £40 is beyond my budget but I'll certainly research this. It's so good you've found someone who doesn't basically kick you out the door as soon as an hour is up Sounds like you've found the right person.

Where are you based? I wondered if your therapist could recommend anyone in London. I'm so wary after spending a fortune on homeopathy in the past that did nothing but I did have positive experiences with massage therapy so I'm open to complementary treatments.

May you continue to feel better! Xx

[emmaibiza in reply to poppy75]

Thank you lovely. I'm so pleased that I'm finally starting to feel better. I feel like the last couple years of my life has been pointless. My life was destroyed by my conditions. I said to my consultant even if you make me 10% better so I can have a bit of my life back I would be happy.

I live in Blackpool hun, you couldn't be further away. I know my therapist has been training in London so I will ask him on Tuesday for you hun hopefully he knows someone for you. It is expensive and I'm still off work sick at moment since surgery and I'm due back in a week and a half so finding the £40 a week isn't easy but I have a little candle business that luckily pays for it.

I'm that impressed with the Chinese physical therapy I would love to do a course to help more people like us. I don't think anyone should have to suffer the way us girls do.

Sending hugs hope you start feeling better soon and I'll let you know Tuesday what my therapist says xx

[JessieP]

It is nice to hear a positive update from people, isnt it? We all cope with so much we kind of have a default setting to express the problems as this is a safe, helpful place to do so.

It's interesting to hear your experiences with Chinese Physical therapy, this is something I'd never thought of before.

I have had very good experiences with physio in general after breaking my back (& foot!) following a fall down the stairs. It was in no way endo related btw, just slipped - on my wedding anniversary - as everyone was waiting for me in the doorway - at Xmas time!

Had to learn to walk again with weekly physio & sheer bloodymindedness!

Im really pleased your experience has helped you reduce meds, that is wonderful.

Jx