Inconsiderate pain

[Kayleigh1985]

Hi all

I'm sat in bed at the moment with my heat pad on and my feet up with painkillers on board and feeling frustrated. I just wish I could have some relief from the pain without taking strong painkillers or having to practically spend all my time sat down with a heat pad on my back. I want to feel more mobile and able to do things. It's so frustrating as I find my future planning of spending time with people and holidays etc are always followed by "but what if the pains bad". Pain is so annoying as you never know when it's going to come along and ruin your day or how something work one day to relieve the pain but not another. I just wish there were magic solutions sometimes to this horrible condition and the pain would be a little more considerate of me wanting to live my life.

Thanks

Kay

[Leah87]

Snap I'm same it's awful I've not yet been diagnosed with it yet but all symptoms and previous lap etc suggests it waiting on fyn now as such as per usual doctors are making me feel like it's in my head I feel useless pain all in left side tonight tummy and back so sore and a can't stop crying totally sympathise with you when we're u diagnosed xx

[Kayleigh1985 in reply to Leah87]

Hi Leah87

I'm sorry your experiencing so much pain. Do you have access to decent pain relief ??? I hate that we are made to feel it's in our head. I remember a time when I was in hospital and despite them giving me pain relief I was still in terrific pain and I asked for more pain relief and I was treated as though I was a drug addict. All I wanted was some relief but was left ignored by the nurses as I sat there crying my eyes out in pain. There is such a negative attitude that needs to change. I was diagnosed about 4 years ago and have symptoms on and off although they seem mainly on. I'm beginning to learn that diagnosis and treatment for endo is a battle that we have to fight (which is wrong) so don't be afraid to ask or tell people what you want to feel like you are in control xxx

[Leah87 in reply to Kayleigh1985]

So true I was made to feel like that2 weeks ago in hospital. And last year it's soul destroying I am back at doctor. This week regarding pain relief xxc

[Kayleigh1985 in reply to Leah87]

Good luck at the doctors I hope you get good pain relief so you can feel more comfortable xxx

[Lesley61]

Yes me too my pains getting worse now my husband had to get me out of bed this morning get me dressed too was in that much pain phone the doctor up sed can not get in till Thursday sed that's no good so she asked wots wrong I told her I was in lots of Pain she asked my name and told me to come down to doctors at 10 .30am so will see wot they to say he's all ready upend my gabapentin so don't know wot he can do just glad my husband was at home to day or would have to have stayed in bed x

[Kayleigh1985 in reply to Lesley61]

Hi Lesley61

I know what you mean my hubby has to help me out of bed and even get me in the bath on bad days. It's so frustrating isn't it. I hope the doctors can give you something for the pain 😃 xxx

[Lesley61 in reply to Kayleigh1985]

Yes it's not good I have good weeks then go back doctors have used my meds again and give me some more pain relief to take as well as the ones I am on iv been awake from 2am this morning not good taking the first lot of my 600 gabapentin this morning see if they help I know got to give it time I was on 400 3xaday no on 600 x3 a day plus morphine patches and parcetmols and the others she put me on so hope they kick in hope you get well soon xx

[Kayleigh1985 in reply to Lesley61]

Thanks Lesley I'm hoping the pain dissipates soon too. I really hope you find a happy medium with your medication and managing the pain. I've never heard of morphine patches do you find they work ??? Xxx

[Clairecarebear]

I read your post and I signed up! I totally sympathise this is exactly how I feel. I have been to see a consultant Mr Trehan in Halifax, he is private. I have had my lap and I'm having surgery 2nd July, he is my only hope but I feel really positive he totally removes endo and has pioneered this. I will let you know how it goes.

[Kayleigh1985 in reply to Clairecarebear]

Hi clairecarebear

That's amazing you got a good doctor and are having surgery I really hope it goes well for you xxx keep us all updated on how you get on xxx

[Rrl12345]

same as you, I was like that all over the weekend with the beloved hot water bottle, you can tell a girl with endo, she has a variety of different heat sources and if ever is brave enough to go away always makes sure has one of them with her or if not goes straight out and buys a hot water bottle! I don't like planning things either and whenever I go go away I end up getting ruddy period and endo pain and you feel like people don't take you seriously as they just think endo pain is once a month and just like a bad period they maybe had when they were 14! if only that were true eh! I had lap which was awful but he was not a specialist and it didn't help at all just made things worse and struggled since then to find anyone to help or take me seriously, they just fob me off and he was awful doctor and since retired and you get rolled eye balls when you mention his name so god knows what mess he has made of my insides!!! I'm trying to look into nutrition and holistic side of things to help and couple of people on here mentioned a book to look at, have you tried looking at that side of things and meditation? I find meditation cd's help while putting heat on tummy and trying to relax? xxx hang in there honey

[Kayleigh1985 in reply to Rrl12345]

Hi Rrl12345

It's so true you can spot a women with endo a mile away as she's normally towing a hot water bottle, heat pad, painkillers, pillows he he. Yeah people don't get it they think because they saw something about it on This Morning they can diagnose and recommend things that you already know about ! I'm sorry you have had such a poor experience with doctors it shouldn't be this way but so many women on here have had bad experiences. I am trying to follow some of the dietary advice that is meant to help endo but not seeing any change yet but gonna carry on with it. Some women say acupuncture is good for pain but not had it done. I may have to try the meditation music though as I know I get worked up when the pains really bad so some relaxation may help.

All the best xxx

[Rrl12345]

I think it just helps knowing not alone as I think because no one else takes me seriously I started to think maybe it was all in my head and I was just being a wimp when in fact I know I have a high pain threshold and it is bloody crippling pain so not me being silly. At least women on here support and helping each other and just being on here this morning has helped me feel not so alone so thanks lovely. There are lots of free meditation videos on you tube you could try and anything with simple breathing techniques also helps - I'm the same as you trying for ages to eat healthy and cut out things like dairy and wheat but makes it so difficult trying to eat out or go away when know everything will be covered in cheese if veggie or red meat options everywhere! keep smiling hun and keep in touch x

[Kayleigh1985 in reply to Rrl12345]

Your definitely not alone and this site is great for making me remember that in difficult times 😄 I can't guarantee you are not being a wimp and it's definitely not in your head. Medical professionals have a way of making endo sufferers feel this way but it is rubbish. You know your body better than anyone and trust that. Yeah I'm lactose intolerant so struggle with mean choices but you find places that will work for you in time 😄 Defo keep in touch xxx

[Rrl12345]

I got into nutrition as result of so much cancer in my family and taken all the people I love most dear but it gets so conflicting, I definitely believe in wellbeing and food as medicine but so conflicting and never know who is right, im looking at list of things in front of me now and don't know what supposed to have for lunch, tempted to give up and just have a huge ruddy cheese sandwich and crisps, sure I used to feel better in the old days on that and vino before clubbing! of course that would mean having those ingredients in the house but our cupboards are full of goji berries, baobab, lentls and nuts!!! shame not retreats for us endo girlies, they'd be great wouldn't they lots of holistic treatments, girlie time and advice on nutrition and supplements! x

[Jewel015]

Kayleigh1985 I call it what it is excruciating and debilitating pain . It is not all in your head at all . I went a few years being dismissed by doctors with that it is all in your head. But in 1996 I was diagnosed and had conservative surgery , then I was able to have children , a son and a daughter . Son VBAC and a daughter natural child birth . Then later I was in excruciating and debilitating pain again so I opted for hysterectomy but my only regret now is that I left a ovary in place. Now I am suffering once again in that same pain . I was without access to insurance and without treatment .. Funny you should mention the drug issue because I was seeing a pain doctor and you know what you get tired of taking pain pills because it does not resolve the problem. Now I am going back in for another lap to get a diagnosis again . I believe I am suffering from Sciatic Endo now .

[Kayleigh1985 in reply to Jewel015]

Hi Jewel015

Sounds like you have really been through it but congratulations on having your children 😄 I'm sorry you having pain again, I would have thought removing most of your gynae system would mean the end but reading stories on here it isn't at all. I hope they sort out the pain your experiencing. Yeah I know what you mean people look at you funny and you feel judged but if we had a choice we would not be taking all the tablet we end up taking as its like putting a plaster over the problem.

Take care and all the best with your lap xxx

[Jewel015 in reply to Kayleigh1985]

Thanks Kayleigh1985, I said my only regret was leaving an ovary in place

My sister in law had a complete hysterectomy around the same time as I did and she has not had any further complications that I know of with Endometriosis returning. I am kicking myself in the butt for not listening to the sis in law ... to remove everything ..

I will find out what the surgeon has to say when she evaluates me on the 17th . She is the same surgeon that did my corrective surgery back in 1996. Then I had my children , my son, he will be 18 in Jan and youngest daughter in 1998 she will be 17 in Dec . So they are almost all grown up now .. The two concerns I have are the Endo being on my sciatic nerves ( I have no uterus ) so where does the endo go from an ovary left in place but to other places ( could I have permanent nerve damage ? ) .. and women with Endo have a higher risk of developing DVT ... a scary thing if left without medical treatment and close monitoring ..

Not sure how soon she would schedule a lap after I see her but just depends .. You take care too and I will definitely update the ladies on here and you as to when and what I find out ..

I am a tough cookie so I will keep my chin up .. Oh and my oldest daughter has twins so I am a grandma to identical twin girls as well so they keep my spirits up .. too I have changed my diet but I still suffer ... and take supplements , I even started taking digestive enzymes to help .. as well .. I am 49 now almost 50 , and still dealing with Endo . I do not suffer with hot flashes either since I started taking another supplement to keep them at bay .

[Kayleigh1985]

Good luck for your appointment and I hope you get the outcome that you would like I have never heard of it on the sciatic nerves but sounds like it would be horrible. All the best with the future xxx