Frustrated (long and possible TW)

eatinwatermelonseeds · March 2018

Right now I'm really just playing the waiting game. And it's really upsetting because I feel stuck. We can't even try because my doctors are worried about my risk for ectopic. I'm in pain every day, I've done two courses of antibiotics with no relief (which I guess makes sense because I've never been positive for any infection that would be affected by antibiotics). I have a follow up for the last course on Friday, but it's with an NP and she's already referred me to an MD who I don't see until the 26th and I know since we're just at the beginning of figuring out there IS something wrong that the appointments and tests to figure out everything that's going on are going to be numerous. I know this isn't the worst it could be, I know that. But with my right tube blocked, not knowing if my left is too, and the NP bringing up a possibility of Endo just makes me feel like this is going to be such a very long process and it may end with not being able to get pregnant naturally, which I haven't totally come to terms with yet... I'm still holding hope that my left tube is clear, but I'm losing hope slowly. We're going on 3 years already, so I guess I am just kind of wishing we could speed the process up, which I know we can't. It just feels so slow. And I keep thinking there's such a high chance of needing my tube removed (I got a picture of my tube from my appendectomy because there was an adhesion and it's massive), which I've read will require waiting a few months after. I'm sorry, I'm just venting. I don't have any friends who can relate. I'm just eager, and scared. Too much unknown territory and still such a long road ahead.

tinjp78 · March 2018

I'm sending you lots of hugs. No need to be sorry for expressing your anxieties here, I've done it several times too because just like you, I don't have friends I can turn to with regards to IF. This is a good venue to get support and I'm sure I and many women here have got your back. I'm sorry you are experiencing pain right now and that you aren't getting much relief. I hope that your next appointment day with the recommended specialist come quickly so you could get answers soon. Please be kind to yourself today and I'm praying that you'd receive peace and calm from all these worries that you have.

mcgeeva · March 2018

I'm sorry for your struggles

Have you done an HSG to check your tubes? Hope you get some answers soon so you can have a plan moving forward.

mayflower513 · March 2018

I dint know your history - but I’m so sorry. An HSG is pretty easy to do and can tell you the condition of your tubes, could you do that? What are the antibiotics for? Are you going to see a RE?

eatinwatermelonseeds · March 2018

@mcgeeva @cmarieb35 I went to the er in December for pelvic pain and they diagnosed me with hydrosalpinx on the right as well as pelvic inflammatory disease for the 4th time (despite all tests for the causes of PID being negative). I had a follow up with a gyn who I thought was great. She made a game plan. She was going to do a round of antibiotics, then an HSG to see if the left is clear, then refer me to an RE. But after my course of antibiotics, I couldn't get a hold of her office. Called 15 times in a week and a half with no answer, no one ever returned calls. A month and a half after my appointment she published a note in my chart about my appointment that mentioned nothing about her plan, had blatant lies (saying she educated me about quitting smoking but I refused resources...I don't smoke), pretty much everything on it was wrong. So, I called a new office and they set me up with an NP. She wanted to do another round of antibiotics in case I was positive for bacterial vaginosis which also causes PID, I was negative but continued them anyway. She had to refer me to an MD who she said will move forward with a plan, likely HSG and possibly lap to check for Endo. It's been a roller coaster.

jenrn1216 · March 2018

@eatinwatermelonseeds I'm so sorry for your struggles and I can totally relate. I am 36 years old and just found out I have stage 4 endo though laparoscopy about 3 weeks ago. I rarely ever had any symptoms, so it came as a huge shock. They had to remove my right tube. I did give my RE permission to take my left tube if necessary before surgery, but luckily she didn't need to. My diagnosis is also difficult because I have very low AMH, which is probably due to several years of this disease that I never knew I had. If you need both tubes removed, your only option to conceive would be IVF. For me, that was something I had come to peace with. So, our plan is to do IVF in a couple of months. She wants us to wait until 3 months after surgery so I am completely healed. If you have any questions, don't hesitate to ask. It truly is a rollercoaster! I hope you can get some answers soon!

eatinwatermelonseeds · March 2018

@jenrn1216 I'm sorry you're going through that. I guess since we still don't really know, I just can't bring myself to totally come to terms with IVF as an option, much less the only option. There's nothing wrong with it, but mentally I guess I'm not there yet. I have done research and I know it's there and it's a pretty big possibility, but I'm still hoping there isn't as much damage as I suspect there is.

Thank you to all of you for your support. I feel so whiny, I really don't mean to be.

mayflower513 · March 2018

@eatinwatermelonseeds I’m so sorry, what a run around. I totally get what you’re saying. Even after I had my HSG I held out hope until my meeting with the RE that it was somehow wrong. I don’t think there’s anything wrong with NOT just jumping to IVF until you’ve figured it all out completely. I hope you get your answers quickly and that the damage isn’t as bad as you think.

mcgeeva · March 2018

Wow that's an awful sequence of events. I hope your new doctor figures everything. I would definitely post some reviews on that horrible practice.

eatinwatermelonseeds · March 2018

@mcgeeva I would, but it was a military clinic. Our options are pretty limited and Tricare just changed out owners or whatever so co-pays to go off base are through the roof. I try to refrain from bad reviews because no one really has much of a choice as it is. I do plan on trying to contact someone to at the very least get my record changed since there was crap in there that made me look horrible, but wasn't true at all.

mcgeeva · March 2018

That's really crummy im sorry

eatinwatermelonseeds · March 2018

I had my follow up with the NP today. No new answers or anything, which I expected would be the case. But she did say she imagines the doctor will want to do an exploratory lap, and I'm wondering if they might be able to just take that right tube while they're there. She said they can combine things, like do the hsg while they're in there checking for endo. So, that actually made me feel a little better. I'm honestly at a point where I'm in so much pain I just want that right tube out of there. Take it, throw it in a can and burn it. Lol dramatic, I know, but gah I'm just over the thing. It's useless and just causing pain all the time.

jenrn1216 · March 2018

@eatinwatermelonseeds were you told the hydrosalpinx of the right tube is causing your pain? I only ask because I also had hydrosalpinx and my tube was very damaged, but I had no pain from it. I know every case is different, but it sounds like there's more going on. And you're not being whiny, just exploring your options! There was I time I said I would never do IVF, but after 5 years of this, I just want to have a chance and right now it's my best option.

eatinwatermelonseeds · March 2018

They haven't said what's causing the pain. I think my NP is suspecting hydrosalpinx at this point and everything I've read has said hydrosalpinx doesn't generally cause pain. But when I had my appendix out in April last year the surgeon took a picture of my fallopian tube for me, and it was very large. She took a couple actually, and I have shown them to the NP and she told me I need to show it to the doctor. It's been a year and I'm wondering if maybe it's grown since then, and if it has the pain wouldn't be as confusing. It's just this constant ache. Goes to the left and back sometimes as well.

jenrn1216 · March 2018

The sooner you can get into have the lap, the better. Sounds like a cyst from the pain you're describing. Good luck with everything! Keep us posted

mayflower513 · March 2018

How can they do an HSG during a lap? Am I reading that right?

jenrn1216 · March 2018

@cmarieb35 that is correct. They did an HSG during mine. It's not done through the lap sites, it's done by inserting a speculum in the vagina and going through the cervix (like a normal HSG procedure)

mayflower513 · March 2018

Well that’s great that they can both together! Makes for less waiting. I’ve had both a lap and an HSG and am justsurprised because of the ultrasound/X-ray part.

eatinwatermelonseeds · March 2018

@jenrn1216 I had an ultrasound in December which showed no cysts. I'm honestly wondering if I may have adhesions that are causing the pain. The np suspects endo as well, which can be painful for some. I had an adhesion when they took out my appendix and after that surgery I had another abdominal surgery, which can cause adhesions as well as being diagnosed again with pelvic inflammatory disease. I'm leaning toward that, but only time (and a lap, most likely) will tell.

greenhillgirl · March 2018

@eatinwatermelonseeds so sorry to hear about your struggles and the limited options with military health care. You will definitely find lots of support on here and many of us turn to the boards when we don't want to or can't bare all to our in person friends. This might sound obnoxious, but have you tried eliminating dairy from your diet to help with pain? I was diagnosed with endo two years ago (no lap) and was in ER with pain and would get the huge 5 months pregnant belly swelling, excruciating lower back pain, etc. I was on morphine in the hospital and then an opioid pain reliever for a while. I stopped eating for a while cause of pain and realized then that cheese and milk and cream were making it worse. I eat butter but no dairy milk or cheese at all and can't believe how much it's helped the inflammation. It's made a huge difference in my life. Might be worth a try while waiting for procedures? Even Ben & Jerry's makes almond milk ice cream now.

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