I'm 23 and have been diagnosed with Endometriosis and Interstitial cystitis. Does anyone else have this? How do you cope?

My endo has tethered my right ovary to my insides so that alone is painful and combined with the bladder problems I am feeling really low. I was just wondering if anyone had any experience of the two combined and how do you keep your spirits high when it's bad? I am having trouble getting used to the fact that I have a lot of years ahead with these two incurable conditions. I do control both with diet which helps but..... any advice would be great :)

11 Replies

  • Hi. I have exactly the same diagnosis. I suffered for about a year with urinary problems and had two procedures to try and improve my symptoms... Still had the pain and so was referred to gynae... And had a lap. I try and drink plenty of water and cranberry either juice or tablets... I take tramadol for endo pain. Am trying to conceive as then hoping this settles the endo for a while... But no luck yet so have fertility appointment. I struggle with exhaustion and the pain... But do manage to work full time and I do watch what I eat and exercise a much as I can. The pain and tiredness are the worst. I have a supportive husband and family but still feel none of them understand how bad the pain gets and how I suffer from day to day. It's good to chat on here a I feel support and speaking to ladies who know how I feel is a god send. Hoping you find some relief best wishes.

  • Hi Lilyloulou,

    I too suffer with both conditions and have done for a good 10 years. I just wondered where you got the advice to drink water and cranberry juice from? As far as i know, drinking water will have no effect and cranberry juice will worsen the pain due to the high acidity levels. I know for cystitis this would be the right guidence, but interstitial cystitis is an entirely different condition. X

  • Hi. My gp gave me that advice. The urologist didn't really do much as just passed me on to the gynae. I avoid fizzy drinks and really only drink water and herbal tea.

  • Hmmmm im guessing your GP has never seen a case of Interstitial Cystitsis before you!

    Check out this link and maybe show your GP next time you see them! ic-diet.com/IC%20Diet%20and...

    All the best in feeling well and healing a little X

  • Thank you for the info defo helpful.

  • gps really are generally pretty clueless about IC which is more than a problem for us suffering from it. My gp googled it in front of me when i had already researched the condition for 6 months! there are lots of helpful IC website (not the dodgy "i can heal your IC if you drink my magic herbs" ones) to help us find ways to manage this horrible condition. Wishing you better x

  • I also have Endometriosis and Interstital Cystitis and I'm on an IC friendly diet as well. I'm not sure if you're aware of this, but cranberries/cranberry juice is one of the WORST things you can consume if you have IC. I learned from my dietician associated with my IC doctor that cranberry juice for things like bladder infections are a myth and actually make things worse/cause severe flares. From one IC sister to another, steer clear of cranberries.

  • I have the same thing and had my first laparoscopy at 24. I had surgery for the endo, then was put on the combined pill (femodette), this regulated my periods and really made a huge difference to my quality of life I went from being in total agony to being normal.

    As far as the IC goes I was only diagnosed last year at the age of 36, I had a long period of remission which I thought was due to the surgery for the endo, which is what my gynae thought the bladder pain was caused by. A urologist diagnosed me with IC last July. Diet is the key as it seems you are finding in your post, but I found it took a while for the full benefit of changing my diet to get my bladder back to normal, no fizzy drinks or fruit as they just kill me.

    I try not to dwell on everything to much, when you are first diagnosed it all feels very overwhelming, but once you have the right treatment, medication and diet you can live a normal life, and most of the time I forget I have any problems, I am now 37 and no one would know I had any health problems at all :) I know a few other people who also had endo and have not had any further problems since their surgeries, so there is hope.

  • Hi Catness,

    Sorry to hear you too suffer from these 2 nasty conditions. Im 28 and have been living with both for a good 10 years. At times its a huge battle, i feel like i cant cope, other times i can almost lead a normal life. Currently i take an anti-depressant, sertaline for pain, also, nortriptyline and pregabaline, these help with the bladder pain, i also have no sugar, fruit or anything acidic in my diet. Please feel free to message me, maybe you even live close and we can meet up? X

  • Hiya. Thank you for your response. Where abouts are you from? ;)

  • I became ill around 15; became diagnose with endo at 15 but nevEr really I got better I ended up becoming home school pain took over my life I was constantly depressed; I became diagnose with CI at 18 I've had two of both endo n CI surgeries n just had my 2nd CI I found the Urologist Dr Fleck she's amazing; I loved my gyno in the beginning but the pass few years I believe she gave up on me n thought it really wasn't nun wrong n didn't think the two had anything to do with each other so I've ended up leaving her and still lookin for a good gyno that understands my situation; it gets rough sometimes ij try to stay prayed up it's good to know I'm not along & I've got good advice tonight

You may also like...