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.

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SO FRUSTRATED! Round 3? or...?

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:(



 

Replies

Heather.2017
Heather.2017

I just was diagnosed with endometriosis and intersticial cystitis and im taking leupron and the emotional side effects are crazy i go from sad to mad to happy its like a living night mare
AllieKitty
AllieKitty

No matter what, you ARE Wonder Woman because you are an endo warrior. Vent away as much as you can and as much as you want. All I can really say is I'm sorry, keep being strong, keep your heating pads and pain meds close, and take care of yourself as much as you can. Be compassionate and kind to yourself as our thoughts and emotions do play a role in our physical bodies. Follow the advice and recommendations of your doctor and if it there is something else wrong, better to know it sooner when it's easier to treat. Enjoy the good, not so painful days and make the most out of them. And, omg, push through it and it will go away or become unnoticeable? Lol, hey why didn't we think of that genius idea? This stabbing pain isn't so bad after all!
AmyMichelle
AmyMichelle

I'm reading your post and I have felt/am feeling so many of the emotions that you are describing. I am 41 and have been battling recurrent almost constant UTIs for 16 years which they are finally attributing to the endometriomas in my bladder and ureters. Please believe me when I tell you, the pain from the IC/UTIs is absolutely brutal. I also experience the blinding pain that you describe on a daily basis and the years of pain has changed me a bit. I am at a stage 4 right now with all of the involvement in my bladder, rectum and colon because I was misdiagnosed for 13 years.
I feel your emotional, physical and mental pain - have you considered seeing a therapist? I have started with one because I honestly felt as though I was losing my mind from the pain. I can no longer have sex and as much as my partner tries to understand, it's really hard for him to truly get it. Maybe that would help for you to have someone not directly involved in your life to speak and cry to?
I could be completely wrong but I thought I would offer my experience. Just remember that you're not alone, you're not crazy and you don't deserve to feel this way. I try to tell myself those things every day. Please take care of yourself and I wish you so much lick
LawyerGrace
LawyerGrace

+1000 to AmyMichelle's suggestion for a therapist.
wonderwoman1118
wonderwoman1118

Thank you all for your supportive responses I appreciate it!
tarauofs01
tarauofs01

I had a laparoscopic surgery as well and one of my Fallopian tubes was destroyed from it. It took me 3 years to try and have a baby. I did iui and pills and injections and nothing worked. Finally I gave up and that’s when I finally got pregnant. That was 2 years ago and now my period is heavier than ever with the bleeding. I think I may have to go through another surgery to burn it out. Hope this helps.
WellThisSucks
WellThisSucks

I'm so sorry to hear about your battle. Our stories are all unique, but we all have the same thing in common- endo just never seems to go away, and is a painful battle that no one seems to know how to stop. I've had 4 surgeries, and each time it was about a year before the pain became unbearable (each time more severe than the last). I finally saw a specialist in California who finally gave me some good info. He told me that anyone with endo should not be on a birth control that still lets you have your period. Instead of taking the sugar pills I just take them straight through. Every time you have a period, your body is basically feeding your existing endo implants, and possibly creating more. He also told me that it doesn't matter how much endo you have when it comes to the level of pain you are in. If the implant is on a nerve it can be extremely painful- even if it's a small implant. I wish I could tell you that seeing him magically fixed me, but I'm realizing that dealing with endo is just going to be a lifetime battle. I feel a lot better after he did my last surgery, but I still feel sore at random, I have absolutely no energy, and sex is still painful :( . I'm hoping it's just taking me forever to heal this time, but some days I just wonder if I'll ever be the same. Either way, I hope some of this info helps :)
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