Endro pain not controlled help! - Endometriosis UK

Endometriosis UK
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Endro pain not controlled help!

Thank you for reading! Im now in a situation im not coping with daily living. 1st my background. Age 14 i was taken to a&e with suspected appendicitis. It was a ovarian cyst. Prescribed the pill. Mefenamic acid. And told to carry on. Age 18. 3 hospital admissions with out of control pain im diagnosised polycystic ovarys from cat scan. Given 30/500 cocodamol. This point im took off the pill due to migraines and given the mini pill. Bled for 7months stopped on my own and carried on with cocodamol this caused a codine dependancy which i had to wean off due to side effects aged 24. Skip 14years from onset im now 28, i had a laparoscopy last year diagnosis of endro, Im also trying to conceive, so hormones are not right for me, im currently taking paracetamol, mefenamic acid. Tramdol on bad days and oramoph for breakthough pain. Im at the point were because of abdo pain i can hardly walk 10 minutes without pain. Im sure ive damaged my hip though walking trying to protect stomach over the years, pain has gone from around period to every day, lying in bed is agony and im at the point i can't imagine carrying on. Gyacology have discharged me due to refusing hormone treatment and sent me back to gps with pain managment, gp dumbstruck on what to do next. I work 12hr days and dread each shift. My marriage is being neglected due to terrible pain during sex. Bowels play up constantly im always having bouts of loose stools and cramps. Im close to tears at the end of everyday and im hoping somebody can give me some advice. I cant afford to stop working but 12hr shifts leave me so tired and in so much pain. Ive cut my hours down to 24hrs so only 2days a week now. Help! Thank You xx

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Wow... you have been through the wars!! I am really sorry to hear you struggling so much but you are not alone.

I hope I am not coming across too rude here and I really don't mean to if I do, but from the sounds of what you are going through is trying for a baby the right time? I can only imagine your body and mind are on so much strain at the moment that maybe let go of that pressure?

As for Gyne, have you been to a Endo Specialist. General Gynes are terrible!! Mine told me I had an STI from 14-20. I had never had sex before! I ended up having to go private to get diagnosed at 21 because no one believed me and as soon as I saw the Endo specialist it was 5 minutes, she knew I had endo and she had a game plan mapped out for me. Even took what I didn't want to try out (menopause) and still worked around trying everything she could for me. Although I now wished I had taken the Zoladex when she suggested it as I started last year and it has changed my life around! 0 pain!!

Now I did go private but there are loads of NHS ones around. Try googling your local one. And also have you been to pain management appointments?

I am sure you have tried these but heat patches, change of diet, exercise... I know you said you cant wait more than 10 minutes but I find doing squats and yoga really help. Hurts at the time but then after it seems to be better.

Communication with your partner as well. I mean I don't have one so this is where my advice could be super weak but I feel if the shoe was on the other foot I would want to know whats going on and how you feel and how I could make it better.... I find its a hard balance with not letting the hormones and emotions get the better of you when someone doesn't understand the pain you are in but I describe it and try and make them understand how hard it is to get through the days. If they are supportive enough then they will only want to do what ever they can to make you better. Or even better, get a TENS machine and put it on them ;) haha (have you tried one of those for the pain? They never worked for me but I know some women that it did)

And finally, have a big cry!! You shouldn't be keeping close to tears. If you can't, but a good sad movie on and have some unrelated tears. The release usually helps mentally....

Sorry for the waffling on. I really hope even just one tiny bit can help you. :( I really feel for you struggling so much but I hope it will eventually get better for you! Stay strong!

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Thank you for your reply, Im in a same sex marriage and have little one already, and my gyne has adviced me pregnancy can help endo? No never seen a specialist, took years for them to agree to a laparoscopy. Im under the pain management clinic yes, but they seem to push me off with opiate drugs, im allergic to naproxen and cant take codeine for reasons above. I do yoga and i push myself with walking, with my little one im often at the zoo or woods i have dogs to walk too i do find doing nothing makes me worse and focus in on pain, but litrally 10mins into walking and im leaning on the pram like a zimmer frame, and its starting to effect my daily life, i cant sleep at night because im struggling lying down then im up at 5am playing on the floor lack of sleep isnt helping me either, im on antidepressants due to how low its made me over the past couple of years and im starting to feel like im stuck, ive been looking into going private but worried about the cost.

First time on a community group like this and been reading lots knowing im not alone makes me feel a little better too, thank you for your reply xx

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Oh sorry for making the assumption. And yeah I’ve heard it makes it better but not heard of many that actually say it does.

I would try and find a ending specialist... could change everything as you don’t seem to be getting the right treatmentb

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Thankyou for your advice. Ill do a little research x

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Hi Tigerlily1990,

I am really sorry about all the pain you have been going through for such a long time. It seems they just throw painkillers at you and expect you to keep quiet. From the sounds of things, it is possible it could be endo, but it has to be confirmed with a scan (if it is deep infiltrating) or a definitely laparoscopy.

I suggest you either go to your GP and demand to be referred to an endo specialist (there in an endometriosis clinic in UCH London and they know what they are doing) or try going to the A&E in UCH, tell them your symptoms and ask for a scan. They can give you a document so you can go to the Walk In for a scan. This was what I did. I don't know if you are in London, but I know there are other endometriosis centres all over the country so please research and find one close to you and keep asking your GP till they listen.

Other things I would suggest (if you dont already do) which have definitely helped me and many other women with endo (I know you have not been diagnosed but while waiting, you can try and see if you feel any better). I know how terrible it is to be on painkillers because they also damaged my stomach lining.

1. Try and eliminate wheat/gluten from your diet for a while and see if you feel better.

2. Also reduce or eliminate sugar, dairy, alcohol, soya.

3. You mentioned you walk a lot, which is great. Just be gentle on yourself.

4. Speak to a professional and do your research about serapeptase (an enzyme that breaks down cysts and adhesions), turmeric and ginger for fighting inflammation, probiotics, multi-vitamins, fish oils and evening primrose oil for balancing hormones.

5. Please eat lots of vegetables, berries and eat less processed foods because the healthy plant-based whole foods help to fight inflammation which your body might be going through.

I wish you all the best and you can send me a message if you want to talk more.

Take care.

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Helllp thankyou for your reply, i am diagnosised stage 3 endo i had a laparoscopy feb 2018. Ive never heard of serapetase i will definitely look into it, ive got adhesions around my pelvis causing all the pain when walking and its on my bowels too causing the ibs symptoms. Thankyou for your support xx

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I know from experience that the endo diet can be very successful and I follow it all the time now - I went from lower back / bladder / ovarian pain 24/7 + constant bowel problems to just 2 days of pain a month now with the endo diet and moderate exercise - but in addition I have cut out coffee and realised it was my biggest poison as far as endo was concerned - and I was only drinking one cup a day before. It competes with progesterone for pregnenolone (the building block of our hormones) and therefore increases the oestrogen imbalance which is what feeds the endo - so cutting it out balances our hormones better.

I find castor oil packs really soothing too - and can help clear up the internal mess that every period leaves behind (though you rub the castor oil on your belly). Google 'castor oil packs' and it will explain all - it's a bit messy at first but now I couldn't live without them.

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Oh - and I know it might sound grim cutting all those nice food out, but you soon learn to discover other foods and recipes that are actually far tastier. I regularly eat - lentils, sweet potoato wraps, mackerel, tuna, salmon, basa, sea bass, some chicken, eggs, pak choi, mushrooms, lots of spinach, lots of leeks, tomatoes, avocado, kidney beans, garlic, chillies, natural coconut cream, almond milk, coconut milk, dark chocolate (full of magnesium which helps make progesterone) thai recipes, oats, some potato, olive oil, walnut oil, buckwheat etc etc - and I dont' feel I'm missing out anymore at all,

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Hey guys, I need to inform you guys Nancy nook endometriosis education on FB is a very good forum and has a vast knowledge on Endo. I know all are suffering in someway or the other so kindly have a look at it.

The biggest example is they have doctors who are pro at removing Endo from every part of the body that attacks and they do the diagnostic and excision in one lap. So it saves time and money and people have had very good results. Kindly check out. It may help one and all.

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And they are also helping with the pain.

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Oh no, I have refused the analogue jabs for a while and my consultant was just focused on me having them !! Even if you decline a particular treatment you still need speacilaist management. Have you had a pain clinic referral ? I recently tried an IAPT living with chronic pain I didn't find the group useful but I am accessing 1:1 support. The pain clinica referral is seperate and I am hoping that they have some ideas.

I feel like I go on a bit about this but my endo nurse has saved my sanity and I think we should all have access to one. My GP is good but they aren't specialists.

A women's health physio may be good I had to asked my GP for a referral. Couples counselling I think you may have to pay but a lot of the women who go to the endo support group have accessed it and found it really helped. Endo puts such a strain on a relationship.

When I can yoga and pilates is really good. I don't like meditation but I ike doing an acitvity which you can lost in. You aren't on your own I know it can feel like that but there are lots of us out there in the same situation and we are all here for you. Take care xx

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I sorry if you haven't accessed an endo speacialist I agree with the other guys that this is essential and you may need a lap and or other investigations with your bowel symptoms endo may be on your bowel too ? Good luck and I think we all have to fight for the treatment which is our right NICE have endo guidelines which should be followed xx

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Yea ive attended a pain clinic, they gave me oramoph for breakthough pain as i dont like the thought of slow release because of my job and daughter.

Since last night ive done some googling and found a hospital in the next city i can be referred too which has a endo clinic im going to speak to my gp for a referral. And also for physio ive had enough now of living like this on just pain relief xx

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Hi Tigerlily1990,

Welcome to the forum! I am very sorry to hear you are having such a tough time, but as the others say, you are not alone and we are all here for you.

If you would like some additional support you may find it helpful to ring our Endometriosis UK Helpline, which is staffed by volunteers who all have experience of endometriosis. They can provide support and information, or just be there if you would like a chat. The Helpline number is 0808 8082227 and opening times can be found on our website:

endometriosis-uk.org/helpline

We also have support groups who get together regularly where you can meet like-minded people who have been affected by Endometriosis. You can have a look to see if there is one near you here:

endometriosis-uk.org/find-a...

I hope this helps and keep us updated on how you are.

Take care!

RicEndoUK

Volunteer Moderator

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Thank you so much. Im in a better frame of mind today with all the advice off here ive made a action plan and feel a little more positive xx

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You need to seek a specialised surgeon and get a laparoscopy ASAP!

You absolutely need to avoid going to a general gynecologist and seek an expert.

You need to go on Visanne or other drugs with dienogest or norethisterone acetate only. Do not take birth control with oestrogen in it.

As far as your hip is concerned, I would go to an excellent chiropractor (I had a similar issue with back pain due to the position I slept in over the years for endo and a retroverse uterus and it helped immesely!).

PLEASE, I cannot stress how important it is to find an ENDO SPECIALIST, not just a different gynaecologist.

If you want to salvage your marriage and conceive, a well-done laparoscopy is the first step

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Ive had a laparoscopy in feb 18 but i agree i need another, ive found a specialist in liverpool im going to see my gp and push for a referral. Thank you for your advice ill look for a chiropractor too xx

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In February?? You should not get a laparoscopy sooner than in two years! Was the one in February unsuccessful? Because a good endo surgeon will clear you for at least a few years. Who performed surgery on you in February?

Were you given dienogest or norethisterone acetate after surgery to keep endometriosis from coming back?

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Your story is almost same as my story two years ago. I also cried every day due to pain but had to drag myself to work.. I also have endometriosis stage 4 and had laprascopy last year. But it never solve the problem. I still have pain time to time. And I am taking visane to control the pain. I found vitamin c is quite helpful. I am taking vitamin c tablets now every day and pain seems improving as well as bleeding from hormonal tablets. Hope it helps you!

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