My new focus

19 Mar

I’ve decided to stop posting for awhile. I’m trying out a new thinking method of “this is just temporary” and I’m pushing all the negative out of my head. So that unfortunately means, no more reading online which is really hard because, as many of you know, it makes you feel less alone when you read someone’s story and you can relate, or you get a comment on your blog of someone encouraging you to stay strong.

I don’t know how long it will be but I’ve got to focus on the positives in my life, and move into a place where I can be happy and hopeful even with this nightmare of a condition. I can’t let this condition change me into a negative worry wart because it’s affecting different aspects of my life.

I feel somewhat guilty leaving all my readers in the dust for a little bit but I hope you all understand. (And for the one family member that reads my blog , please don’t ask me about this post 😊 ).

I will leave you all in a positive note. I’ve been going back to PT and as difficult as it is and mostly painful, I’ve noticed huge improvements. Even more than I noticed before when I was going. So I’m focusing on my pretty big victories lately. I hope when I post again, I will have more good news. I just wanted to leave you all with that positive because, no matter how difficult this condition may seem, you can’t give up. Just keep trying treatments even if they take time to work, give it time. I know how overwhelming this all can be and when you feel like you’re drowning keep fighting. Find things that make you happy and hold on to it. We are all warriors fighting for our health so continue to fight back. My thoughts are always with everyone suffering through this invisible condition. πŸ’œπŸ’œ stay strong my warriors

A particularly difficult day

23 Feb

I didn’t expect my emotions to take over like they did today. I had an event for someone that I am not very close with and a few of my high school friends were there. It was a little awkward since I haven’t seen them in so long and I realized I haven’t been making an effort since all my medical things have been going on.

Anyway, besides that, I had a difficult time at the wedding shower. I felt like I had a big fake smile on my face and had to tell people how great I was doing. It’s not like I could be like oh how am I? Well, let’s see for almost two years I haven’t been able to be intimate with my boyfriend, I have very expensive medical treatments I have to pay out of pocket for and oh yeah my vag is pretty angry most of the time. How are you, engaged? Great, I’m so happy for you. Insert big fake smile!!!

I’m happy for my friends but it was difficult seeing everyone so happy, engaged with big beautiful rings. People asking if I would be engaged any time soon and id have to put a big fake smile and say, oh no, not for awhile. When I really wanted to say… Well my vagina is inflamed, and I can’t have sex, so no… No engagement!! Thanks for reminding me though. My one friend recently engaged, had a big diamond ring and she looked like she had lost weight. She was really thin and kept flaunting her left hand around. My other friend is having another baby girl and I just feel stuck in my life, wanting to move forward but I have this big dark cloud over my head. Then I left the party and tears started rolling down. I don’t know why, I don’t even like the girl who’s getting married. I felt like I had to hold myself together for a couple hours and when I left I just felt relief to get out of there.

Then I found out some other news for someone important in my life and I don’t think I can be there to support them. It was too much to deal with today and I think I would break down if I were apart of their special moment. And it makes me angry that I’m having such a difficult time.

So that’s my poor me vent sess!! I know I’ve been kinda posting depressing posts but it’s been a roller coaster to say the least. I hope all my warriors are staying strong. I hope I can find my hope and positive thinking soon!! I just feel like I’ve been strong for so long and I’m slowly starting to break down, piece by piece. And I’m so exhausted from dealing with this endless nightmare.

Xoxo

Late night worries

21 Feb

I feel as though I’ve taken a couple tiny steps forward and then a big leap back . I’ve been having pain in my abdomen again and I finally went to get it checked out to make sure there wasn’t a new cyst growing. Thankfully there wasn’t. This pain started when I began working out again and my doctors thinks it could be that. So great, work out and suck up the pain like I’ve had to do for awhile now, or let myself gain more and more weight!! Will this vicious cycle ever end!!!!

I’m embarrassed to see people, esp people I haven’t seen in awhile. My self confidence is very low and I’ve never felt like this before. I’m worried people will say, oh my, she’s gained a lot of weight. I saw a picture of myself recently and I was like ok… Look at that double chin, and those thighs?!

I’m so frustrated with the way I feel and it’s hard to motivate myself to workout esp with the new pain I’ve been feeling. What to do.,.

At least I don’t have a cyst but I’d like an explanation for the pain. I finally made an appointment to go back to physical therapy!! YAY! Or not really yay because I’m not looking forward to the whole experience and financial burden again but my PT has been a really great guide on this journey. I’m anxious to hear what she has to say about the pain. I think it could very well be my damn pelvic floor muscle spazzing out with my new workout since it’s been over a year since I’ve had any kind of exercise.

I wish with all of my heart that no one else develops this condition and that doctors can find an actual 100% cure so not a single person has to go through this and we could all be released from this endless pain. I wish that I could wash away my anxiety and fears that seem endless. I wish that there was more awareness for this condition so women can educate their daughters, sisters, mothers, aunts etc.

That’s all I had on my mind tonight. I hope all my warriors manage to stay strong through all the battles they are facing. XOXOπŸ’œπŸ’œ

Recently…

1 Feb

I’ve felt like everyone’s life is filled with joy and happiness. Like engagements and weddings and pregnancies and babies and I’m over here with my burning, angry Vagina. That’s all I get?

It’s like my life is passing me by and I can’t move forward with anything until my medical expenses and V issues go away. I can’t save up for anything except my medical treatments, possible surgeries. I can’t splurge on a two week vacation or a nice new camera lens because I need to spend the money on my treatments. So there goes an engagement anytime soon, buying a house etc.

Sadly, I heard this happy news about someone close to me that I should be celebrating. Instead tears came to my eyes because it’s a reminder that it’s not happing for me. Every time I hear about someone else’s joyful news, I am reminded of my struggles and all that I’ve had to endure this past year and a half and as grateful as I am for my job and the support of my family, it breaks me down little by little, piece by piece. I’m happy, obviously for my dear friends and families happy news but I’m still reminded of all I’m going through and the fact that I don’t know when it’s all going to be over, or if it ever will go away. I won’t stop finding treatments even if it means sacrificing certain things in my life.

I do celebrate even the smallest victories for myself because it’s one step forward. My most recent accomplishments are turning my 10-15 min walks into 20-30 min walks/ runs, having somewhat successful sex with lidocaine cream, staxyn, and a little wine πŸ˜‰ and also being able to wear a tampon for a small amount of time. What an amazing thing!! It was such a luxury to be able to wear that instead of a big, bulky, uncomfortable pad!!

I miss the ease and spontaneity of sex. It is such a long process now and I get really sore after so it’s not an often thing I attempt but it’s nice to be able to have that intimacy again even if it’s far from being what it use to be.

I look back on where I was a year ago- unsure, sad, hopeless, being on an extreme diet, having yeast problems, fighting with my bf, my body attacking me, not being able to exercise and I can stop and see how far I’ve come and I’m grateful for that

Stay strong my warriorsπŸ’œ I hope everyone’s journey is on their way to healing xoxo

It’s been awhile…

5 Dec

It’s been awhile since I’ve update my blog and I wanted to post an inspirational quote on my instagram but I had too many thoughts racing through my head and couldn’t find a quote to fit my mood. This post may be sporadic…

A few personal things have been going on, outside of me and my medical condition. My one friend is going through similar medical frustration I went through, and I’m trying to be supportive while dealing with my own issues and trying not to think, oh please, let me tell you about pain and the never-ending cycle of doctors and expenses, or at least you can still have SEX. Β And the other, my sister is going through a breakup and has been coming to me for support. Now, I’m immediately going to be there for her, she’s my sister, but she’s been MIA this past 16 months. I know what it was like to want to call her and vent to her when I needed her and not have her there and I don’t want her to ever feel that from me but I don’t think I can keep doing this pick her up when she falls every now and then. I’ve been through it before with her and its upsetting not having her around when I lose her. All that being said, she still never asks how I’m doing because it’s always about HER. I don’t think she intentionally means to be selfish but she is. I guess it’s time to speak up AGAIN. I’ve already told her how I’ve felt and it made no difference at all. She thought that calling me twice and texting me once during my surgery situation was enough. Just because I’ve recovered from my ovarian cyst surgery, doesn’t mean that it ends there, I’m still struggling every single day with this condition but she doesn’t know that because she never asks.

Anyway, I’m the one that needs to be selfish, keep the negative thoughts away, keep the stress away, keep my “girls” aka V happy. I have to constantly think about myself every single day and I can’t worry about keeping in touch with people, or worrying about their problems. But somehow I do, I’m always the one people come to when they have problems and need to talk. I guess is good in a way, I’m glad that people can find comfort in me I just wish that it wasn’t only one way with her.

Anyway, that’s off topic of why I started this post. I just realized this past year plus, that life goes on. No matter what struggle you are fighting or battling, life doesn’t stop for you. I can’t let this get in the way of doing things that I love. Like taking romantic vacations even if I can’t have sex with my boyfriend while away. It’s sad to think about, but I’d rather go on vacation than miss out on the memory. Life will just slip away. It already feels like it has. All the money for my condition could have gone toward, a new camera or camera lens, new work clothes, a 2 week vacation to Hawaii. All my PTO could have gone towards a vacation, or days off to go visit my nephews. But no they’ve all gone to DOCTOR VISITS, PRESCRIPTIONS, etc.

I just want to feel like myself again. I’m gaining weight, anxious stressed out all the time and I want for once to feel like I can breath again without the weight of the world on my shoulders.

This past year I’ve never been more grateful for the love and support of my family, my boyfriend, his family, my friend A. I thought about at Thanksgiving how lucky I was even though this condition has taken over my life. My bf has been there every step of the way and I don’t know how he puts up with me sometimes. My older sister, who lets me vent, offers me her savings bonds every chance she gets, and she just listens when I need her to. My parents have offered so much financial support even though I know they may not be able to afford it. C’s family, offering financial support also just so I can heal and get the treatment I need, no matter what. Everyone has just been there, willing to do anything for me to get me better. I wouldn’t have seen that kind of love and support from everyone if it weren’t for this stupid vagina problem. It sounds weird, and I’d give anything to make my life go back to the way it was before this condition hit, but since I do have it and it’s not going anywhere for awhile I may as well see the good. I’m grateful for my job, my quarterly bonuses, and all the knowledge of health insurance that I’ve learned at this job.

I think that’s it on the emotional stuff filling my head, so here’s my update. Lidocaine works SOMETIMEs, not always unfortunately. I have my San Diego Appointment this friday and I’m really anxious to see what the next step is. I’ve been able to do some walking, no a lot but about 15-20 mins, I started lifting some weights. I’ve put on a lot of weight recently due to my inability to zumba it up lol I use to do Zumba, and kickboxing at the gym and I really miss it. Anyway, sometime next week I will update you on the appointment

Stay strong my warriors, never stop fighting back. Stay hopeful ❀

A much needed update: UCLA appt, lidocaine cream, lidocaine& gabapentin cream, SEX

30 Oct

Hi everyone,
I come sharing good news today and strengthened hope. I guess it’s true what people say, “you just need to get laid”. After 15 months of no sex I’m excited to announce I was able to finally have sex!! And yes, getting laid strengthened my hope. πŸ™‚ I’ll start at the beginning

A couple weeks ago, after my phone consult with my San Diego doc. Which I wrote about in my last post, I was really torn with trying lidocaine or not. My doctor told me that it was just a quick fix and it made me feel like I shouldn’t even be trying to have sex. So I thought about it for the next few days, and discussed with my boyfriend who was trying to be calm but I could tell there wasn’t a question for him to have me try it haha can you say excited at the thought of being able to have sex? Anyway, I thought, why does no doctor care that it’s been this long and no sex? (I may have gone on this rant in my last post, sorry) it’s been 15 months and I can’t even have penetration without immense pain. Even when I was doing PT we couldn’t have sex. He could get in but as long as he didn’t move I was okay and that’s not sex! Anyway, I decided it was time to take initiative and not let my doctor make me feel bad for wanting to try that. Which is a common medication to help with vulvodynia. So my doctor gave me a 2.5% lidocaine cream, which I was pissed about because it was a low dose and I didn’t think it would work.
Anyway, I obviously picked up the prescription immediately but had to wait a couple days to try out because I was on my period.
And a couple days later it happened. It wasn’t the moment I had dreamed about, it wasn’t perfect. It’s a long process waking for the cream to kick in, ( and I’m sure you can imagine our patience level lol) getting into a comfortable position. Anyway long story short it happened, it worked! I almost started crying in the middle. Being able to experience that intimacy and closeness again, it was just what I needed to restore my hope. There was a little discomfort it was 75-80% better than the pain without it. I don’t know how to explain why it gave me hope. I guess I had gotten to a point where I thought I may never be able to experience sex again and no doctor really seemed to care about that factor of my condition so this cream, even if it wasn’t the same as what it was before it still allowed me to be intimate with my boyfriend and even if this never goes away I can still have those experiences with him. Anyway moving on to my UCLA dr. Rapkin appointment. Bear with me it’s a long post :/

Oh, I should mention that I didn’t experience any discomfort after sex. Just slightly sore. We had to use a condom which have always been very irritating when we used them in the past and since I’m not on the pill it was our only choice. So I took a warm bath with baking soda after and it was 2 days after I got really itchy (from the condom I think) we bought non latex and that didn’t cause the itchiness after.

So on Friday, I went to the UCLA pelvic pain clinic to see dr. Rapkin. I’ll try to make it short and sweet. I went because I couldn’t get an appointment with her until early January and if I went to the clinic I got an appointment that month. I’ve heard mixed reviews about her but decided to get another opinion and possible treatment plan/options. It was a whirlwind. My boyfriend went with me, we were there for 3 1/2 hours I saw 2 doctors and medical students were in the room. I was examined by 4 people ouch!! The students had a turn to feel if you catch my drift! But hey, if one more medical student can eventually specialize in this then feel away! Anywho, one doctor was all about doing a nerve block while dr. Rapkin seemed to be more let’s start at the basics (topical) great! 15 months into it and I get to start at step 1. Which makes me angry that I didn’t start at that step with my other doctors. So she thinks I won’t need a nerve block injection if I go back to physical therapy, and she prescribed me 5% lidocaine and gabapentin combo cream which is hopefully in the mail when I get home!! Fingers crossed!! Anyway, I’m still debating PT or not because my other doctor wanted me to stop going until they can treat the inflammation of my skin. She also wants me to go to cognitive therapy which I’m considering. And I’m going to be participating in her study where I get $125 for going and I get an MRI of my brain.

Overall, it was good to hear a different opinion and to be able to hear about different treatments other than ESTROGEN cream haha enough already!!

I feel like dr. Rapkin cared about my emotional health as well as the pain. I’m glad I didn’t listen to the review I had read and heard about from the women at the support group I went to awhile ago.

Stay strong my pain warriors! The most important thing I’ve learned is that second opinions are the most important thing! You need a whole crew of doctors on your side and don’t listen to everything you read online!! Besides my blog lol πŸ˜‰ I’ve challenged myself to stay positive and push out the negativity! So stay hopeful, positive and strong! My thoughts are with you today πŸ’œπŸ’œ

15 months and still no sex

14 Oct

First, I’d like to say that my last post was depressing and I’m sorry for that. I try my hardest to stay positive but sometimes it’s impossible to not let the negative and what ifs take over. But this is another depressing frustrating post

So the other night I tried having sex. AND it definitely DID NOT go well. Not even in the slightest bit. There is just no breaking my walls of steel as my physical therapist use to call it.

So now it’s been 15 months and I’m desperate for something to fix this. I told my boyfriend that I just wanted to have the surgery (vestibulectomy) just get it over with. I’m tired of waiting. I told him that it feels like the doctors don’t care that it’s been 15 months and I haven’t had sex and the best they can do is keep me on estrogen cream?! That’s it, that’s all the doctors have given me. I wanted to try everything before I went down the road of surgery but now I’m willing to try anything, just make the pain go away, make me feel like a normal person again. Cut the pain out of me I can take the pain anymore.

My current specialist is really expensive and I won’t be able to afford the fees to have him perform the surgery, if I’m a candidate. He does this test to numb the vestibule if it works then surgery is an option if not then, well, I’m pretty much screwed!! Anyway, I’m looking into getting a second job hoping to be able to save up money by the end of the year. He’s the best and I obviously don’t want to go into debt but I want the best doctor cutting up my Vajajay! I don’t think I’ll be able to save up enough for the surgery but at least I can save up enough to have the test to see if I’m even a candidate for the surgery or not. Anyway, going off topic- I just want this to be all behind me but this doesn’t feel like it will ever go away and I told my boyfriend that if we try everything and this will never go away then he just needs to break up with me. He didn’t take that very well he thought I was joking and it may have come off as a joke but I was serious. How can I live without being able to give him the most basic thing sex? How do you continue a relationship without being able to satisfy your partner? I don’t want to put him through a lifetime struggle with this condition knowing I can’t give him that. Anyway to say the least emotions between us are on pins and needles. This isn’t easy and I’m always so anxious he doesn’t understand that part and he tries to calm me but sometimes it just turns into a fight

So that’s where I’m at another hopeless, depressing post. But I’m still fighting for my health. I wish I could raise money and start a nonprofit to raise money for other women who are dealing with the same thing. Maybe one day I’ll get there, so for now I’ll just keep sharing my story in the hopes that it will reach one other women struggling, feeling these same emotions and make them feel less alone. πŸ’œ my heart is with all the women struggling with this chronic pain & any other invisible illness! Stay hopeful even when it seems impossible and unbearable because even if it’s not today, one day a doctor will figure this out and there will be a cure for ALL of the different types of vulvodynia πŸ’œ xoxo sending positive thoughts to everyone

Here is something one of my Instagram followers posted. It immediately spoke to me and I had to share

You can find me on Instagram for more updates and inspirational quotes- hungryitaliangirl

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