Hi friends and fellow endo sufferers,
I am new here and need to vent (SO badly) and bounce ideas off of people who actually understand what I'm talking about! It's probably going to be long winded, here we go...
For starters, I'm 24, a newlywed (got married just over a month ago), and have been diagnosed with endometriosis (at 18), interstitial cystitis (at 19) and hypertonic pelvic floor dysfunction (at 19).
I have had two laparoscopic surgeries for endo, once at 18 and again at 22. Each time it's been mild/moderate, with my ovaries and fallopian tubes completely unscathed. My growths have been reccurent on my bladder and around my uterus, and I had some grow on my ureters and intestines as well. All have been removed each surgery (except for the ureteral growth, because the damage from removal is apparently considerably worse and very likely to result in a blockage and more complications down the line than leaving a small growth that could go away with hormone therapy, or something like that. I spent from 19 til I was almost 21 with pretty fiercely combating the IC and PFD. I saw a uro-gyn for that and a really good pelvic floor physical therapist. They helped me a lot. It was a LONG journey to get it under control (internal injections, lots of PT, daily diazepam vaginal suppositores, bladder medications, diet changes, etc.), but once I did, I was feeling REALLY good (finally!). I felt great from 21-22. Really, really great. At 22 I started having period issues and pain issues again. Not as bad as the first time around, and not as bad as the peak of my PFD/IC troubles, but enough of a decline that my doctor was concerned. We ruled out bladder and pevlic floor issues, so my reproductive endocrinologist/fertility specialist did my second laparoscopy at that time and removed the new/recurrent growths and inserted Mirena (many of her patients have had a lot of success with it so I gave it a whirl). I've been on both my pill and Mirena now for 2 years. It took a while for me to adjust to Mirena (about 9 months I'd say?), but once I adjusted I felt pretty good. My periods are the lightest they have ever been in my life now it's totally awesome.
Now here's where my frustration comes in... I had a year or so of feeling great again, but I started going downhill again a couple months before my wedding. It was a slow progression, and I attributed it to stress and chose not to worry about it. I kept up with my IC and PFD stuff because that is more routine and relatively easy to keep under control now. I figured everything would turn out just fine, and it pretty much did for my wedding, I can't really complain! I had a great day with no weird break through bleeding on pain, but I did kind of excessively pee all day, which intensifies frustration a bit when you're wearing a mermaid dress lol. But bottom line, I had a fabulous wedding day and nothing stole my joy! We had a great honeymoon as well, my hubby and I had an AMAZING time. But, on my honeymoon my problems that I had been experiencing in small pieces a few months prior started to kick up a notch. It became a little bit harder to ignore, sex was getting really painful and hard for me to do, I was having more cramping and chronic pain, and I was having breakthrough bleeding. I was a little bit bummed, but we figured it was just coming down from the stress and excitement of the wedding and we chose not to let it ruin our fun. We came home to our new house and puppy and resumed normal life, but sex was still causing me a lot of pain, in fact it was increasing by the days it seemed. The pain was getting worse and lasting longer.
Last week, I woken up in the middle of the night with something that I could only describe as blinding pain in my pelvis, like very severe, level 11 on a scale of 10 cramps. It really scared me. I felt like I was going to black out standing up to find ibuprofen and a heating pad. I did eventually get to both and manage to fall back asleep with the edge taken off a bit. This has happened to me a few times before in my life, oddly enough each before I reached a peak of some sort with endo and ended up getting another surgery, so we will see what happens this time... But anyway, every since, I've still been having severe cramping (not necessarily the 11 but like a solid 8-9) at least once every day, usually in the morning or at night or after sex, but I'm generally uncomfortable for almost the whole day on most days lately. Sex is very painful for me, despite my pelvic floor being in good shape. We still try at least 4 times a week though because we are newlyweds and really want to be doing it, but I just feel like such a failure and a disappointment lately.
I'm feeling so down. My doctor wants me to start with some ultrasounds to rule out more obviously noticeable things, and then have an exam to make sure my IUD is where it should be, but if everything shows up clean and she has no reason to believe that it's coming from anywhere else, she might want to do another surgery again. I just can't believe that. I'm not like a stage 4 endo case, I'm in the mild-moderate category, and I've been on TWO proven effective birth controls to prevent this from happening, and it might already be coming back in only two freaking years?! I just want more than one year of feeling good at a time, is that so much to ask for? I'm just worried. I know that something is wrong, and all I know for sure is that it's not my pelvic floor, and it doesn't seem to be my G.I. track (that has actually felt really good lately!). I'm just worried because I know that something is awry, and I know that it's either going to be endo AGAIN, which depresses me because I really don't want to go through this cycle every couple of years my whole life, or it's a urinary thing, which is opening up a whole other can of worms, or there's something much more concerning going on here different from my more typical issues, which really scares me the most.
I guess I'm just feeling a bit depressed as the days go by because I know this song and dance. It takes months to get things in order. It takes forever to even get the process really moving. It's a waste of time and life, and I'm at a point in my life right now that I have always dreamed about and looked forward to, and I'm getting to a point where it's really hard to enjoy it. I'm afraid of how this will effect my marriage so early into it. I'm an independent contractor, and I have very little motivation to work because I feel so sick most of the time lately. It's hard for me to even get dishes or laundry done on days like this. This is not what I pictured my life being like at this point. I'm trying to do my best but I just feel so discouraged. I hate laying around. I'm not much of a lazy day person, and I am an extrovert. I HATE that I'm bound to my heating pad all the damn time lately, I just hate it.
Does anyone have any insight? Any advice or words of wisdom? None of "my people" truly get it. I mean they all understand, but they don't know what to say to me most of the time and don't really know how to help except to either tell me to just take it easy and rest (UGH) or just push through it and it will go away or I'll stop noticing it (UGH x 10... like seriously? lol). Hubby is very sweet and understanding, but I know he's not particularly thrilled that I can't enjoy sex with him and that I can't do a lot of work right now. He doesn't pressure me and he has a very kind heart, but I can sense the stress. I just need some help or encouragement or something:(