Losing weight for Endo Surgery

I have had Endo for 21 years,over this time Gynae have done Surgeries,I've been on Pill's,HRT,Prostap,I've had coils all to no avail it just keeps coming back and with a bigger vengeance everytime. I don't how much more pain I can take. The other day I had one of my usual chronic pain episodes after a bowel movement,the pain was so bad I really thought my heart might give out. It took 45 minutes for my pain killers to work,it felt like a lifetime and then my body went into shock and I shook violently and threw up,then passed out. It took days for me to recover. I also suffer from chronic pelvic pain and chronic lower back pain and my mobility has been poor for the last few years and due to this I have gained a bit of weight. Gynae have decided they need to do another surgery but wont touch me until my BMI is under 35,I really need this surgery! I dont know what is wrong with me,I know if I dont lose weight I cant have the surgery but I just cant do it. Please help does anyone have any ideas on how to motivate yourself to lose weight when you are having to live with this massive weight on your shoulders everyday. I also have Endo in my nose,it is agony and when my period comes my nose bleeds like my period,it is so painful I cant touch my nose for weeks. I think sometimes its hard to explain to other people just how painful and debilitating Endo can be and i've had people say to me "well at least its only once a month" but its everyday and not just physical pain but emotional pain,I dont want anyone out there to suffer but its comforting to know I AM NOT THE ONLY ONE,and other people go through this every day,just like me. Thankyou for taking the time to read my post, any advice about the weight loss would be greatly appreciated.

8 Replies

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  • I am so sorry to hear what you are going through. I have found that weight watchers does help for me but I know commercial diets can be very hit or miss, and depends on the person so sorry I can't be much more helpful with that, but just wanted to post to say how sorry I am to hear you are suffering this much and once again it makes me mad that people do not take this condition seriously enough. Take care x

  • Oh hunni I've had all wot u have and ur life just stops I really really understand. I had a histo. 3year ago I was 33 and it took 8 years to get one. I'm sitll in so much pain. And in hospital every 4 weeks. I really do understand bbes. I'm on face book if u every need to talk. Kerry smith. Kerrydouglas42@yahoo.co.uk xxx

  • Oh hun I'm so sorry :( but like you said you are not alone and never will be. I am on prostap and hrt and pills and pills and pills haha. Its not a fun like and I too have gained a bit of weight and they want me to loose some b4 my next op. See your gp. They can give you somethibg to take to the local leisure centre and you should get reduced membership like 12£ or something a month for everything. The person you see will help create a plan for you (this is what I did) and he did an eating plan for me and I swim as much as I can. I also have PCOS which alone makes you gain weight and makes it harder to loose it.but swimming helps. Agreat deal and I have a theory that when you swim your organs float hence less pulling and less pain. Makes sence to me lol. There's a great support group on facebook

    m.facebook.com/groups/35097...

    That's the link I'm on my phone so if that doesn't take you to it the group is called Endometriosis Hope. And you can always shoot me a message for a chat blessings to you hun

    ((((((Hugsssss)))))))

    Heather xxx

  • Hi Amberg,

    Have you thought of asking for a second opinion. Ask your GP to refer you to a gynaeclogist who has a special interest in endo. Check out the BSGE website and see if there is a specialist centre near you. Write down the name of the specialist at the centre and ask your GP to refer you to him.It's tough to be assertive when you have chronic and severe pain, but we have to be to get the best treament and it certainly sounds as if you are missing out on this.

  • Hi, as a fellow sufferer I know what you're going though. Some people can be so insensitive. With regards to your weight, Tesco have some really good diets online. You get meal plans for the week and can get all the ingredients needed added to your shopping list. You also get instructions to make the main meals. I recently went on a diet for the first time after having my 2nd child and was pleasantly surprised as I was never hungry whilst following the diet and managed to get to my ideal weight quite easily. I really hope you get to have your surgery soon and are in less pain!

  • hi - i am still waiting for a diagnosis, my gp is convinced it is endo with all the symptoms i've had/got, i also have a large chocolate cyst on my left ovary which they found a couple of weeks ago with an mri - gynae dept have said i need to lose weight before they will do any surgery, my bmi is 48 so i am very obese so they are also constantly blaming my weight for my symptoms, but my symptoms have only become life changing in the last 4-5 yrs which is when i stopped doing extra activities such as long walks and cycling on wkends with the family, because i couldn't handle being away from home when being on my period, then my periods became more erratic so it became an even bigger issue (which seems more often on it than not) and i barely go out except for work really but i have gained weight in recent years so am now in a vicous circle, as even walking a mile causes me to be laid up anything from a few hours to sometimes days.

    but, one of the gynae docs (she wasn't a consultant for sure, just a very patronizing doctor) said eat more fibre and your pain will go away and even more so when you lose weight, she said i needed to get to a bmi of 40 or less, she also said having the mirena coil is a waste of time for an overweight woman, it does nothing (well they suggested it, and yes its doing nothing other making things worse) - whereas your gynae has said 35 or less - i think it should be individually assessed, they haven't even done any pre-op to see if i would be fit for surgery, i am healthy in every other way, my blood pressure is normal, sometimes low, i have normal levels for cholestorol and sugar, and yes i am now following a healthy eating plan, more or less based on slimming world type and am walking more to improve my fitness. i also am still working, but i've had to cut down on the amount of hours i work, purely on period problems - i keep telling them my weight has never hindered my life in any way, i have always done the things i wanted to do, my life has/is hindered due to my periods.

    they are also failing to see that all the women on my mothers side have all had hysterectomies by the time they reach 40, my mother was 33, i am now 40 and whilst i am not assuming i will have a hysterectomy, with large cysts and fibroids and polyps, i do sometimes get fed up when they just use my weight as an excuse, and there has been no offer of help from anyone to try and help me lose this weight - my gp has reassured me many times she knows the problems i have are not caused by weight, she says the extra weight will probably add to the pains etc and i can accept that, i'm not too naive to think they don't affect it.

    i would go back and ask why each area has a different bmi guide xx

  • just read that back, sorry if its a bit jumbled lol xx

  • Hi Amberg7 I am so, so sorry to hear what you are going through. I've just recently purchased a book off Amazon which is by a Catherin Levett it is a book about a special diet for endo suffers. There are a lot of restrictions on the diet but mainly cut out all dairy and wheat products. It gives over 250 recipies to follow. I know eating organic vegetables can be expensive and buying all the ingrediance to cook the sauces etc but I've found it works and the pain seems to be lessening a little bit so I'm finding that I can cope with the pain a little better, more better days than bad. I have lost over a stone now. I hope this helps. xxx keep in touch and let us know how you get on.

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