endo or not? please help

hi there my name is Laura and for the last 4 years have been experiancing terrible pain to the left side

here is my symptoms

pain

leg pain on same side

tired

i will try and keep my story as short as poss!

this is what has been happeneing over the last 2 years

I was scanned and nothing has shown up, also ultrasound, i had a laproscopy which showed up cysts which were then drained, no sign of endo, for 4 months or so after the cysts were drained i had less pain.

whats happening now is ; in july the doc started me on a injection called lupron, which suppreses the ovaries and stps them working, this was for diagnostc purposes so they could check that the pain was definatly coming from the ovaries, (which i knew it was!) its 3 injections, 1 each month,, the last 4 weeks have been hell!! with all the side effects from the depot, hot flushes, menopausel, headaches, deppressed,, anyway i was due to go in today to have the last one, but couldnt bear for them to inject me again with this, i must say that my pain improved by 70% but i wanted the side effects to stop,.

When i initially agreed to having these injections the plan was, after 3 months to have another laproscopy and take a look at what is going on, so today i was seen by a different consultant and he suggested continuing with the injections for 6 months but have hrt to help with the side effects,,

I am totally confused now,, i told them i didnt want the injection today (just couldnt face feeling like crap still) and i would have a think about it, they have booked me back in next week ,,

it does greatly help with the pain but im really scared to have it again, even with the hrt,, the reason i am posting this on here is that i have read that this is a good treament for endo?

I have thought all along i have endo , and this has made me think i definatly do now.

also the other thing that confused me was, the doc said about removing the ovary but said both would be removed? i asked why he would take away a healthy ovary and he just sort of shrugged!!

please help advice needed thanks xx

5 Replies

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  • Hi Laura,

    First of all if you have ovarian cysts then you probably have endo and even if you got cysts removed on ovaries it could have implanted somewhere else which was not picked up by your doc.

    I was never put on Lupron just the Yasmin pill to control my periods but to be honest I think it makes endo worse.

    I have researched this condition a lot as I had never heard of it before I was diagnosed with it and I decided to help my symptoms naturally and it has helped to ease the pain.

    You see endo is an oestrogen dominant condition meaning that your body has too much oestrogen which causes the endo to flare up and spread. I have changed my diet to try and get rid of excess hormones in my body this is what I found:

    Red meat - this is a no go and it usually pumped full of hormones so try and stick to chicken, fish organic is even better for you but that is not to say I don't have a fillet steak once in a while

    Cut out wheat - wheat products make my condition worse causing gas, bloatedness and cramps so I have tried to go totally gluten free this is hard and sometimes I have a slice of brown toast now and again but try to totally cut down

    - tea and coffee especially really give me awful stomach cramps...it is something to do with the caffeine raising oestrogen levels. I swear by lemon and hot water sometimes I add a little honey and it is great for cleansing the liver to help get rid of excess toxins

    - dairy products - I have swapped normal milk for rice/almond milk and cut down in my cheese/egg consumption/chocolate consumption

    - plenty of green veg such as broccoli/Brussels sprouts these are good for iron to make up for the lack of iron-rich red meat you are eating

    - On a night out swap wine for cranberry and vodka as the sugar and acidity in wine gives me awful cramps the next day and my whole bowel/urinary track is messed up but cranberry helps to detox the liver (even though the vodka doesn't ;-) ) but is a hell of a lot better for your liver than wine!!!

    Anyway this is what I am doing and I feel it is definately working, less cramps and only have a dull ache once in a while...hope it helps

    P.S I am getting a lap done to remove a cyst of my left ovary in the next month or so but the gyno said that she may have to remove the left ovary if it is the one that keeps causing the trouble but she said i would still have my right ovary so I don't know what your doc is playing at suggesting taking a functioning unaffected ovary out... I would deffo get a second opinion on that !!!!

    All the best with everything

    H

  • Hi Laura

    Unfortunately, the only way endo can be diagnosed is by laparoscopy (an op to just have a look around inside to see what's going on). If your symptoms improve while you're on the injections then it's an indication that endo could be the problem, but it's not a diagnosis.

    It sounds as if the cysts on your ovary were simple cysts which are extremely common and not an indication of endo. It could well be that you are prone to these and that's what was causing the pain.

    Whatever the case, you need to know more before they start removing organs, and the only way to find out more is by laparoscopy .

    Regarding the injections - taking HRT alongside them can help the side effects drastically. And rightly or wrongly, a three month course of injections does seem to be a standard tool that many doctors use before they will operate to see what's going on.

  • aww thanks very much for the replies,, i will certainly give the change of diet a go, thank you for that.

    I have decided to not go ahead with the injections, i cant face the thought of it,, its all bee messed up cos i seen a different consultant yesterday than my usual one who knows all my history and had agreed to do a laproscopy after 3 months of these injections,,,, i think the dr yesterday just had a quick look at my notes and saw i was in pain and suggested the injections. I didnt like the part when he said to take both ovaries either! seems silly to me.

    well i am now waiting for the hospital to phone me back to see if i can see the first consultant and have the lap,, its so hard cos i didnt want to go in telling him his job but i just didnt feel like he was listening to me!!

    thanks ladies xx

  • you have tried lupron and it does suit you..it is entirely your decision to stop or to carry on. you have to live with what it does to you, not the doctors, and it doesn't cure you of endo at all. So if you do have endo all it does it temporarily pause that but it will still be there again when you start to ovulate afterwards.

    The HRT might help some but not all the side effects, so too can anti-depressants.

    But equally if the pain is the pain issue for you, the right pain killers as and when required, are just as effective. The bonus to stopping is that if you do have endo and then you do have a diagnostic surgery and the endo is active it is much easier to see it and then to remove it. If you supress the endo temporarily then a surgery date comes through and all is quiet in your tummy then those dormant endo lesions are so much harder to see, and it is therefore much more likely that some may be many of them will be missed in the operations and nothing gets done to remove them.

    So while having lupron before even being diagnosed is one way to test whether the pains are gynae related (which they are) the manufacturer does not recommend this approach. It is simply a delaying exercise for you having surgery.

    Having an op to get diagnosed and get the endo if you have endo, surgically removed is you only hope of actually getting rid of those endo lesions. There may be some missed, there might be some too tricky to remove, but for the most part many places where endo tends to grow can be operated on and the endpo cut out or lasered back.

    As with most of us the biggest battle with endo is to get it diagnosed in the first place, and with an average of 9 years from first visiting the GP to finally getting a diagnosis, clearly far to many of us are fobbed off time and again.

    You will have to get pushy and take control over your own health.

    Do plenty of homework, know what you are talking about to the professionals and push for a laparoscopy. GnRH drugs like Lupron do help some ladies, do make quality of living a lot worse for many of us too, can leave you with long lasting side effects, and ultimately doesn't cure endo.

    So if it is too grim (and I found it dreadful myself too) then quit. I should have stopped mine sooner but i did make it through 4 months and it just got progressively worse side effects wise as i went through the days and weeks. It is YOUR choice.

  • Thanks so much that has really helped lots, I know I do need to take control more when I am seeing the consultants, you think i would be used to dealing with specialists as I was diagnosed with malignant melanoma 2 years ago, touch wood that is all under control so its just the stomach troubles I need sorting out now

    You have all been so helpful and I understand a lot more now

    Thank you x

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