Stage IV Endo + Hashimoto's & now advised Stage 2 CKD

You'd never believe that 4 years ago I was fit & healthy - riding my custom built road cycle all over London, going to the gym, going fell-walking in Cumbria... now it's all I can do to get myself to work! I was diagnosed with primary Hashimoto's & secondary Hypothyroidism in Oct 2013 & I take Levothyroxine. In Oct 2015 I was diagnosed with Stage IV Endometriosis + Adenomyosis + 7cm Uterine Fibroid sitting across my fundus. I started a GnRH-a (Prostap) with add-back bio-idential hormones (Estradiol gel, Progesterone pessaries & Testogel) and Actonel Combi (Calcium & Vitamin D3) and have just had my 13th Prostap injection. My next gynae review is on 14/11/2016 and I have just received a letter from my Consultant Gynae Surgeon advising me that unfortunately my last x2 Creatinine blood tests are showing that I have stage 1 CKD and now stage 2 CKD. My Creatinine was within normal range approx 1 year ago - this deterioration in my kidney functioning appears to have happened quite quickly. My thinking is that it could either be an auto-immune kidney disease, or it could be that the Endo (which had invaded my Ureters) is affecting my kidney function, or it could be the iatragenic affects of the Prostap medication. Has anybody experienced anything similar to this disease process? My Consultant Gynae Surgeon has now referred me to the Nephrology team, and my GP has referred me to Endocrinology. I cannot believe that I am suddenly, in the last 3 years, facing so many health problems. I wonder how much of a role stress & the production of pro-inflammatory cytokines has had, and continues to have, in my disease development & progression... has anybody done any research in this area? Feeling utterly fed up. It seems that no matter what lifestyle changes I make (getting out of London to live & work rurally, maintaining an AIP lifestyle etc) my health is deteriorating. It's frightening... and confusing. I donlt know whay this is happening to me...

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  • When you were diagnosed with stage 4 endo in Oct 2015 was this in general gynaecology and is GnRH agonist treatment a stop gap while you await excision at a BSGE centre? Your stage of endo must only be dealt with at such a centre and you should have been immediately referred. A year seems a long time to wait. Although kidney failure is usually a slow and insidious process due to ureteral endo it is a known silent process that can ensue if left untreated. Are you having your blood pressure monitored as this is often the only sign since the kidneys control blood pressure. Why aren't they treating you urgently in a centre?

  • Hi Lindle, thanks for the reply :-) I was investigated & diagnosed within a specialist BSGE centre. I had just started a new job & said that I wasnlt in a position to have immediate surgery (hysterectomy & extensive excision surgery including possile small bowel re-section & hopefully temporary ileostomy, as well as possoble re-section or stenting of ureters) & I asked to delay until Spring 2017. I was offered the GnRH-a as a temporary non-surgical measure, and it has worked extremely well for me (despite the horrendous effects in the first 3 months as my system was adjusting). I didn't think at that time that the ureteral endo would cause CKD & this wasn't ever discussed or explained to me. My creatinine at time of Endo diagnosis a year ago was still within normal therapeutic range. My understanding about Prostap is that it reduces Endo adhesions - it certainly has done with the Endo in my small bowel because when I had the sigmoidoscopy 3-4 months after starting the Prostap there was no longer an evidence of small bowel adhesions despite these being very evident on the U/S & the MRI pre the Prostap, though I know I have to be off the Prostap for a while before I can have surgery. I haven't been having my BP monitored, no. My Next Consultant Gynae Review within the BSGE Centre is on 14/11/2016 so I'll be able to discuss things more then. Thnak you for your thoughts Lindle... you have given me some more things to think about and query/clarify on the 14th.

  • GnRH agonists are only effective for mild to moderate endo and they won't have any direct effect on adhesions. However, in the case of fibrinous adhesions (before they become dense and fibrotic) if less severe endo is halted by the GnRH agonists then this will allow the body's own enzymes to break down the adhesions in the absence of the repeating inflammatory process. But endo affecting the ureters is usually nodular from the uterosacral ligaments and it is acknowledged that GnRH agonists (and no medical treatment) will be effective on this form of disease.

    I strongly suggest you get yourself a good BP monitor such as an Omron. I knew I had ureteral endo from my blood pressure readings although my GP at the time didn't know what I was talking about - this was before we got the BSGE list established. I had to find a specialist on the internet and demand my right for a referral since I knew my kidneys were at risk. Sure enough it was on both ureters.

  • I did not know blood pressure had anything to do with that .

    This is very interesting

    I am past endo age but the blood pressure thing just hit a nerve because of other stuff I'm going thru

    Is it because pain raises it or another reason

    Shelly

  • It's because the kidneys control blood pressure so if the ureters are constricted and kidney function is compromised then the kidneys can't do the job of controlling blood pressure effectively.

    I was past endo age at 55 (7 years after TAH/BSO) when I knew I had post-menopausal endo causing this. Even though I had no ovaries my symptoms were cyclical - I turned out to have a massive multi-cystic mass that was rupturing every month - and my blood pressure went to 212/110 with similar regularity. Unbelievably my GP wasn't in the least concerned and presumably thought I was making it up which had been the general belief for the preceding 25 years! As mentioned above when I got myself to a specialist I had it on both ureters. I did have some pain in my back in what seemed to be the kidney area too. But reported literature says that for any woman with endo reporting high blood pressure (cyclical or not) suspicion must be raised for ureretal endo since it has so few other symptoms and can be causing silent kidney damage/failure.

  • So Lindie

    You had no endo until 7 years past menopause

    I had menopause early

    About 15 yrs ago and am pain free

    I wonder if surgically induced menopause can be worse for endo pain ?

    I had early menopause because a stupid dr put me on fertility drugs to ovulate high dose for 13 cycles.

    Since I found I was ovulating just fine so I ran out of eggs with that treatment

    I was probably shooting aboit a dozen a month which made me fall to the floor in pain

  • I have high blood pressure now but past menopause for over 15 years

  • Lindie

    Are you saying you had no endo until after menopause ?

    I'm sorry I forgot if yours was surgically induced or natural menopause .

    My dr said something about the Aden one at 25 he said not real common as I was young for that

    I'm glad I did not get at the time that there could be more to come years later

  • I must have had it because I had worsening symptoms down the years from the moment I came off the pill (20 years) - very heavy , painful periods with huge clots, back pain, decreasing cycle length, constant infections, multiple allergies, overwhelming fatigue, brain fog...the list went on. It was a surgical menopause and my uterus, ovaries and tubes were confirmed disease free at histology. No endo was found in my pelvis and with such squeaky clean organs if retrograde menstruation is involved I don't think I could have had it. But after stimulation with HRT a huge mass developed out of the POD. So I guess I had a nodule somewhere that I honestly think I would have known nothing about if I hadn't been given HRT.

  • And with that kind of dx I can't believe they make you wait

    Ask them who is sicker than me ?

    Because it sounds like you need their attention last year

    And now

  • I had endometriosis effecting the ureter causing the kidney to dilate. Once this was diagnosed, the consultant arranged a diagnostic lap and inserted a stent urgently. Did you see an urologist about this? Did you have a Renoscan to check kidney function? Normally prostap injections help with endometriosis, however most people don't have it for long. I had 3 months in between my two operations to shrink the endometriosis lesions.

    Sorry to hear you have so many health issues. Hope you can get this sorted most urgently.

  • Hi Stella, thank you for your reply. No, I haven't seen a Urologist but my Consutlant Gynae Surgeon has now referrred me to Nephrology Consultant. I have noticed that I am having difficulty wee-ing... its like its becomeing a bit more difficult to get the flow going, I have to push to get to create pressure to push it out. I donlt mean really really push but, you know, there are definite changes over the last few months (sorry to be so base!) I will make a note of some of the things you have said so that I can ask about them at my renal appointment, which unfortunately isn't until January 5th. The Prostap injections & bottoming out of my Estrogen has definitely shrunk the adhesions in my small bowel but perhaps hasnlt had the same effect with the Uretral Endo, unless it has but the kidneys were already damaged when I started the Prostrap and perhaps that wasn't know then a year ago, but then I did have a pelvic U/S back then & there wasn't any obvious concern about my kidneys then. I'm just trying to make sense of why in the last less than 6 months my creatinine has gone from being within normal range to now not just CKD stage 1 but stage 2. I just had my first full renal panel bloods done last week, which my GP requested, so it will be interesting to see what they show re what my creatinine is now, and my GFR (which will be the first time I have had this investigated) etc. I'm sorry you needed a Ureteral stent... do you still have that? How are things now for you?

  • Even though there is significant enlargement of my kidney and ureter from the stricture caused by the endometriosis lesions. There is no kidney function damage. I had stents for 4 months. I am now completely stent free and back to normal 6 weeks post operation. I am due to have another renoscan to check my kidney function in a few weeks time. I understand work pressure may force you to delay your operation. I had to delay my treatment due to work/ study commitment. However in hindsight I should had it done earlier.

    I had difficulty emptying my bladder for the first few weeks post operation. The operation involved removing part of my bladder and I had to have catheter for a few weeks. I was told to practice 2nd voiding to avoid urinary retention. It basic means after you first wee, wait for another few minutes then try to empty your bladder again. It is amazing how many cobwebs you notice and also help your bladder too!

    Hope they can stabilise your kidney conditions soon.

  • You are smart

    It could be all of what you are thinking

    It could be the drugs are getting your kidneys to not function well

    You need to get to the dr and get a plan of action

    If you must say it out loud at front desk in front of other patients

    This sounds stupid but I've had the best results with this way .

    It's sad we have to yell at them and jump up and down to get what we need

    But do it anyway

    Yes maybe there are some sicker and that's sad but it does not mean you get ignored

    A different kind of specialist maybe a dr that specializes in auto immune

    Endo is auto immune as well

    I'm sorry

    Keep us posted

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