Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I am going for a check up January 14th with my OBGYN, but I am always so anxious that I forget to ask questions. What I would like to do is write some down before I go, but I need some help.
It has been almost eight weeks since my first lap and diagnosis. They were unable to remove the endo on my ureter so I need some answers as to what will happen to me in the future. How do I address this to my doc without sounding like I'm a complete lunatic. As mentioned in a previous post I am on an added hormone with my birth control to slow the growth. But how will we know when its time for another surgery if there is no way to track the growth rate? My doc is just so optimistic and I don't want her feeling like she has failed me.
What are some other questions I should ask her? This is all so new to me and I don't quite know or understand why this disease effects everyone so differently. The spots that were found in me were very small but I was in so much pain every day that it was hard to walk. I still get the pains every two weeks that involve deep cramping that sometimes feels like back labor and then the stabbing pain that comes out of nowhere on my lower left side where the endo is on my ureter.
As always, thank you for any suggestions! I hope you all had and are still having a great holiday season! Let's hope this new year will bring us all some new answers and peace of mind to beat this disease!
It has been almost eight weeks since my first lap and diagnosis. They were unable to remove the endo on my ureter so I need some answers as to what will happen to me in the future. How do I address this to my doc without sounding like I'm a complete lunatic. As mentioned in a previous post I am on an added hormone with my birth control to slow the growth. But how will we know when its time for another surgery if there is no way to track the growth rate? My doc is just so optimistic and I don't want her feeling like she has failed me.
What are some other questions I should ask her? This is all so new to me and I don't quite know or understand why this disease effects everyone so differently. The spots that were found in me were very small but I was in so much pain every day that it was hard to walk. I still get the pains every two weeks that involve deep cramping that sometimes feels like back labor and then the stabbing pain that comes out of nowhere on my lower left side where the endo is on my ureter.
As always, thank you for any suggestions! I hope you all had and are still having a great holiday season! Let's hope this new year will bring us all some new answers and peace of mind to beat this disease!
Ask what stage the endo is?
I always ask whats the plan going forward ... like what are the next steps or suggestions?
Maybe in regards to the Ureter - ask what complications might this cause? Is this what is likely causing the majority of my pain and will it continue because you couldn't remove it?
Not sure if you have kids or want kids but I ask thoughts on that?
That is all I could think right now. Also, the last time I had a post op appt I left my phone on record so I could listen to it after. If you go alone, it helps because everything seems to mesh together. I didn't tell my doc, but it really helped me later on.
Oh ... may ask about pain management? Can he/she give you something to manage the pain?
Hope that helps. Good luck. Stay strong
ks
I like what Kara said about asking what the plan is going forward. It might not hurt to ask her to list all your options so you feel like you understand them better.
Honestly, I would also ask if you should see an endo specialist about getting the endo removed. There ARE specialists out there who can remove almost everything safely. Your doctor may not be flattered by the question, but if she is a good doctor she will want what is best for YOU even if that means seeing another doctor.
I usually just talk about my symptoms and ask if they are endo-related, which they usually are.
My best advice for going to your doctor post surgery is to treat it as a job interview. That sounds clinical but I found I had much better interactions when I wore my job interview outfit and was put together. I also think it's vital for you to write your questions down because I can assure you you will forget them. After my surgery in December 2013 I sat in front of my doctor and cried hysterically. Because I hadn't written any of my concerns or worries down I forgot them all. The best thing to do is just jot them down in the notes app on your phone over the next two weeks and just add anything that comes to mind.
Please remember no question is a dumb question. If you want to know more about how the disease works it's always good to ask for them to recommend literature. John Hopkins has a very simplified over view which I found very helpful when I was first diagnosed.
http://www.hopkinsmedicine.org/gynecology_obstetrics/specialty_areas/gynecological_services/conditions/endometriosis.html
The best questions to ask are regarding on going treatment which will most likely be hormone treatment. Make sure you outline which contraceptives you have used/are currently on and if you've had any significant side effects on them. For me figuring out hormone treatment has been incredibly complicated so just remember that it isn't exact and your body will need time to adjust (even though I know it's just the most awful and frustrating thing). Hormone treatment aims to stop your menstruation and in turn this will significantly slow the growth of endometriosis.
Even though I am sure you're really nervous about what the future holds it's really important to concentrate firstly on your current treatments. If you are struggling with chronic pain after surgery it is always a good idea to ask for a referral to a pain management specialist.
If there are specifics you would like to know such as further surgery you should ask this. You will not come off as a lunatic to your doctor, just someone who is concerned about their long term health.
So my main advice (and i'm sorry for such a terribly long response) would be write down your questions and always ask for clarification. If you don't understand something you MUST ask for them to explain it till you understand it. They are a Gynaecologist who would have spent a minimum of 7 years specialising in this field and they will understand if you don't grasp everything immediately. That's their job, not yours.
Best of luck, I hope this is of some help to you :) x
( My case was a rare one and I don't want to scare you, but want to let you know what can indeed happen)
I had endo removed by a well known specialist from my ureter in 2008 with resulted in scar tissue that nearly killed me by strangling that ureter. In January of 2014 I was hospitalized in critical care in severe kidney and liver failure due to that ureter having been back flowing for months. I almost wound up on dialysis and/or could have lost that kidney. Luckily, after my 6 nights in the hospital, I was finally released, though still in acute renal failure. I sought out my new specialist, Dr. Dulemba who was thankfully able to successfully remove that scar tissue off of my ureter and restore full function to my kidneys in May of this last year.
This doesn't mean that your endo shouldn't be removed, but definitely ask your doctor if the endo on that ureter it is intrinsic or extrinsic...and how she plans to monitor it's function.
Hope this helps. Hugs~ Jenny