Advice on this email I have just sent to my Dr....

[MegVarny]

Dear Mr Khazali,

Thank you for your letter which I appreciate very much. I hope you don't mind me responding but I wanted to make sure I got all of my answers out to you in time for our appointment on the 22nd October. I appreciate you are a busy man so I am fine with you reading this at the appointment.

I would just like to point out that my period pain and periods have got increasingly worse over the last few months, not better. I also want to advise that the injections help with my leg numbness but not my daily pain.

I appreciate and understand why I need to have low expectations of the surgery if I choose to go ahead with it, but it has been 13 years of daily pain for me and that is half my life. I have had enough and I am exhausted and very frustrated. The mirena coil very much helped with my pain but only for a year and then it all came back.

I really need/want answers because it affects my mental health, especially the bloating that I get because I struggle with an eating disorder.

If it isn't the endo that has grown back and is causing me:

Bloating

Bleeding & pain after sex

Painful ovulation and periods

Lower back pain

Right sided pain

Numbness in the right leg

Painful passing of urination and stools when due on and on my period

Stabbing pains up my vagina and bottom

Pain when running at times (to the point of almost passing out)

Nausea and fatigue

then I would like more tests to figure out what on earth is causing me all these horrific symptoms and pain. I hope you understand why I am so upset and frustrated.

I thank you for all that you have done so far and I look forward to meeting in a couple of weeks.

[weekari]

Good job! How do you feel now you've sent it?

Have you had any endo excised?

I take it you've been on hormone treatment for a while? Are you aware this doesn't actually 'treat' endo, it just helps with symptoms but endo can continue to develop. I only find this out recently and was shocked.

Is your surgeon a specialist in endo?

I really hope you get satisfactory answers from this. You deserve to know what's going on with your body and if there's better treatment available to you, you're entitled to it.

Got my fingers crossed for you.

X

[MegVarny in reply to weekari]

Hello, I feel a little better and slightly relieved now all my questions are out and ready for our appointment, I always worry that I will miss something out.

I haven’t been on hormone treatment for a while because it doesn’t work for me. Only the mirena worked but like I said in the letter, it only helped my pain for a year.

I have never had my endo excised no, I had it lasered by a general gynaecologist 4 years ago and then a year later after persistent pain, they opened me up again but didn’t find any endo.

I am now seeing a BSGE accredited specialist which is who this letter is for. He is telling me that because of my last op 3 years ago, he might not find any endo either.

I am so frustrated! X

[weekari in reply to MegVarny]

Oh, I think I've heard your story on another post. Sorry you've had to explain it again.

Just trust yourself. You know something has to explain what you're experiencing and it's most likely going to be endo. Fingers crossed it'll be excised while they're there and you'll wake up a new woman! Xx

[Sez73]

Firstly, good on you for writing this letter and taking the responsibility and initiative to help yourself by putting into words what is an excellent, concise, and to the point letter explaining the impact Endo is having in your life. I know we shouldn’t have to do these things but 15+ years of battling has taught me you have to do it as no one else will and you must take control, these doctors are not some Gods we should be worshipping the ground they walk on, they often make mistakes, they get it wrong and they can seriously misjudge this awful illness and we’re the ones who ultimately suffer the most.

Secondly, in my humble opinion, I do not believe you should be told to have low expectations for having further surgery and that Endo may not even be found. Why?.... because (just my opinion), your Endo was lasered by a general gynaecologist initially which is not the ideal way to remove disease, excision will give you more of a fighting chance of relief of symptoms, albeit often only for a while as Endo can and will rear its ugly head again a lot of the time sadly. So there is more than a chance Endo is active esp due to your excellent list of symptoms which screams out that you have active endometriosis. I’m upset for you that a BSGE specialist should even comment that further surgery may not help given your recurring symptoms esp when you’ve only had Endo lasered by a general gynaecologist.

I suspect you are completely correct in your assumptions that your symptoms are Endo-related, I have had aggressive disease re-occur twice post surgery, the first time within six months of extensive excision (not even layering which is second rate to excision) the second time within a year and the third time within two years. It comes back and I think you’ve made an excellent decision in sending your letter.

I’ve recently met with two new Endo surgeons to discuss my ongoing treatment after my last surgeon retired. I am not simply going to my GP to ‘pick’ me another surgeon, I’m taking initiative like you have and I have handpicked surgeons, often paying for a private appt to meet with them and see if they ‘fit’ me, to check if they will understand me, how this illness affects my life and to see if there is a willingness there for them to work WITH me for ongoing future treatment. I’ve been failed repeatedly in the past by GPs, so I applaud you for taking some control and writing your letter.

Funnily enough, both new surgeons I met with recently congratulated me on the notes, questions and expectations I outlined in letters to them prior to meeting them. My letters made them stand up and realise I am not to be messed with! I understand this illness and am taking control to limit it’s impact on my life and they were v respectful of that fact.

You can be responsible for what happens to you. Stay on top of things, you are right in relating all your concerns in a letter and I wish you all the very, very best with it and going forward. Well done.

X

[MegVarny in reply to Sez73]

Thank you so much for this response, it is very much appreciated xx

[Sez73 in reply to MegVarny]

You’re welcome, sorry it was so long! Good luck with everything love x

[MegVarny in reply to Sez73]

Don’t apologise, it was very very helpful!! I will probably read it for a second time later as well. Thank you and you too xx

[Sez73 in reply to MegVarny]

Glad it helped, just shout if I can be of any help. All the very best to you x