What now?

In November last year, after a long, hard year, I was diagnosed with endometriosis.

My surgeon said that he had found more endo than he would have liked to, in the pouch of douglas and on my right ovary, also a cyst was removed, I've also been told that it may be very hard for me to have children and that the earlier I start, he recommended that I start trying now, I turned twenty years old this week, I've been with my partner since I was fifteen years old, we are settled and happy, he's been incredibly supportive and understanding, but I am just not ready for children yet, is this selfish of me?

My endometriosis is hereditary, my Mother's ended in a hysterectomy, I find that her advice is very optimistic, and sometimes I'd like to hear a different opinion.

Two months on from my surgery, I am still in agony, I'm passing large clots and have that awful pulling pain, I'm taking such strong pain killers I feel drowsy and out of it, this is leading to problems at work, and I'm in constant fear that I won't be kept on at my job, although they are very understand, they have a business to run.

I am currently taking codine, menafamic acid and the mini pill to control the bleeding, but I am finding no relief from this, are there any other pain killers that anyone finds helps?

I also hate taking the medication, as I suffer with asthma and severe constipation (also endo was found on my bowel), are there any natural rememdies/diet changes that any one has found helpful?

I just feel very lost at the moment.

Does anyone have any advice for me?

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8 Replies

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  • Hi I was diagnosed with stage 3 endo in December I have been TTC for 2 years with no luck naturally we may start IVF soon but I have just been to my kinesiologist who has put me on a course of supplements, everyone needs very different degrees of supplements however I found this website very useful for which supplements to take: homemademedicine.com/home-r...

    I am also starting a teatment of acupuncture which after 1 session I found amazing, I will be doing this weekly in the short term & then going to every 2 weeks and then every month.

    I can't comment on when you should start TTC however if you are not ready perhaps try alternative treatments to see how they go with regards to pain & side effects & it may even minimise the endo. I wish you all the best!!

  • I find Iboprufen better than coedine, which just made me feel sickly and constipated. However, you must take it with food or after food. I have asthma too, but although there is a warning for asthma sufferers I have been fine. I would also suggest a no wheat diet, but still have plenty of soluble fibre. I am trying an anti-inflammatory diet e.g. onions, garlic, cloves, chilli peppers, ginger and peppermint (I love peppermint tea), cherries, prunes, blueberries, curry powder, dried currants, dates, paprika and liquorice.

    Also I have soya milk (as foods with soya beans), fish and eggs have high trytophan (an aminco acid, which is converted by the body into serotonin, a natural pain-relieving chemical that also has anti depressant properties and promotes sleep.

    I am no expert - the above is only through research I have done, as I believe very much in selecting foods that heal. I have some food intolerances, so no some foods can harm.

    When I am really bad with my endo, I find a hot water bottle helps.

    Good luck with everything and hope you feel better soon. Nichola

  • Hi, I read somewhere that codeine doesn't work for some people (can't remember why, but it was a proper medical reason!) and if you are constipated anyway it could be making things worse.

    Anyway, I take soluble diclofenac (more expensive for the NHS than tabs, but I was advised that when you are in a lot of pain, your digestive system stops and so tablets just sit there) paracetamol (even though it's over the counter, it is very much worth taking, my GP prescribes large quantities for me) amitryptiline which helps me sleep and deals with nerve pain from ops and the odd codeine at night although they don't help me much.

    The thing with painkillers is to take them regularly, and with any anti-inflammatory you need to eat to protect your stomach.

    I'm not sure about the soya recommended above, I thought soya increased oestrogen, but then I get so confused by all the dietary advice that I just eat what I want these days so if it does help some people it might be worth trying.

    I did try 3 months taking Evening Primrose Oil, Agnus Castus, and magnesium but didn't find they made any difference except to my purse.

    What has helped is that I downloaded a pain app to my phone. This lets me record exactly where I feel pain, what sort of pain it is and when it happens and so I've been able to predict what pain I will have when and take the appropriate amount/type of painkillers to manage it better. It also allows you to record your mood, which is interesting.

  • I know how you feel with the pain killers, i'm on the same as you, mefenamic acid, combined paracetamol and codeine and the pill but sometimes its just not enough. I was advised not to mix any pain killers such as iboprofen with the mefanamic acid, I cant remember the extact reason but its not good for your tummy for the same reason you need to take the acid with food so just be ccareful there if you do take any others maybe ask your gp first?

    I hope they can give you something better hun, i've been asking for ages but i'm still waiting to see a gynecologyst to send me for a lap to confirm whether it is endo or not for now so my gp thinks its best to keep me on these :/

    My mum had endo also and I am the result of a succsesful round of IVF at aged 38! I guess it differs each case but you have to do what you feel is right I guess :)

    xx

  • I hate having to take painkillers but find it is the only way I can make it through a day at work atm! At the moment I'm on 15mg co-codamol, as I found the 30mg once they built up helped the pain but made me feel disoriented! Diclofenic sometimes helps too. I try to make sure whenever I taking tablets regularly my stomachs got some food in it and the doctor can prescribe a tablet to help protect it stomach lining. If the pain is really bad I have tramadol, which does make me feel out of it. I have previously had slow release tramadol and found these really good and was able to continue working with them, tho wouldn't' t advise doing a lot of driving on them.

    I think over the last few years of trying different pain killer that everyone reacts differently to them so it is trial and error! Though since joining this I've read quite a few post on diets etc that seem to help, so I will definitely be giving this a go!

  • I have been told to avoid soya due to the estrogen in it. Agree with the gluten free part though. I follow a naturopathic diet which is gluten, dairy and carb free. Challenging, but it does help.

  • I wouldcsuggest you try to find a really good homeopathbor medical herbalist and see if they can sort matters out

    also insist your gp does

    thyroid antibodies

    free t4

    free t3

    ferritin

    folate

  • I was told at 21 to have babies or I may not be able to if I left it too long. I am so glad I did!

    With the help medical and surgical help I have had three children (and unfortunately two miscarriages). I honestly believe if I hadn't had my children when I did I would not of had a family.

    Do not be pushed into having children if you aren't ready but research treatments that will stop your Endo from becoming widespread.

    I am now 43 with stage 3/4 Endo, my bowel ovary, uterus and bowel are stuck together. I have Endo in my POD, on my ligaments ,also have chocolate cysts and I have adenomyosis.

    As for pain relief I take diclofenac suppository and two paracetamol/codeine together. I also use hot water bottles and heat pads.

    Good luck to you.

    Barbara

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