Julie Jacques | Pelvic Health Patient Advocate | Pelvic Health Summit

– Thank you Julie for coming in – Of course Thank you for having me

– Yeah so, I really want to talk about your journey, and everything you've been through, and so how long ago did you start to have symptoms? – My symptoms first started when I was 13-years old, so even before my first cycle actually they started, – Okay and what did you start to feel? – Strange cramping feeling, pressure, sharp pains, and my Pediatrician they sent me to Gastroenterologist and they just thought that it was IBS at that point, because I never started my cycle yet – I see – Yes – Okay At the time were you able to go to school, or participate in sports when you were feeling those symptoms? – I was playing Soccer, and I did miss about a month of school, trying to figure out what was going on

And then it kind of eased off a little bit – Okay – And then I got my cycle when I was 14, and it was always really, pretty bad, from the get-go yeah, I would have to miss school for like three-days, use the heating pad and everything – Wow, okay And similar symptoms with the cramping in your abdomen? – Yes

– Yes, okay Did it move anywhere, did it go to your back or hip, or buttocks or down your legs? – No it was pretty much just in this area, the lower abdomen and then when I was 15, I dropped to the floor because I had a grapefruit sized cyst I found out – [Allyson] Right – And that's when everything started, when I went to my first Gynecologist appointment, and during that surgery for this cyst, they questioned Endometriosis – I see, okay

– And that was the first time I ever heard about it, or anything, so, yes – Okay, got it And anything else after your surgery for your cyst, anything that was done? – Birth control pills – Birth control pill yep And did that help you? – They put me on a bunch of different things, 'cause I was getting sick from it

The patch I would throw up and everything like that – I see – So they tried all different things, they tried the NuvaRing but I was way too young for that – Right – Couldn't manage that yet

– Okay – And then when I started feeling the period cramping, without my period I started going to specialists – Okay, got it At first it was coming only with your period, for a couple of years – Yes

– And then it started to come more often – Yes, once I had that strange pain was probably starting when I was 13 – Right, right – And then it kind of leveled out, and then when I got my cycle, it was just during my cycle which was horrible, and ovulation was really terrible for me as well – [Allyson] Okay

– So then I had the cyst surgery and then everything kind of spiraled from there I believe I had my first Endometriosis excision when I was 15 with Dr Rickard at Westchester Yes – I see

And then afterwards and then you felt better? For a bit? – No (laughing) – It took some time – Yes – Okay – It's tough the surgeries and everything, so I was in and out of school all throughout high school

– Through high school okay – So I would do home tutoring through the school, they would send Teacher's to my house and everything – Okay – So I would try to some of the year, and it was a lot of surgeries back and forth – Okay, alright

So Junior and Senior year? – Yes – So part Junior and Senior – Yes – Okay, that's hard, that's challenging – Yeah definitely it was, and you don't really at that age, you're not understanding what's going on, you just want to feel better

– Feel better – I wanted to play Soccer, and just enjoy my time with my friends and everything – Okay – It can be challenging for sure – Okay and during that time, did you have any symptoms where certain foods, would make it feel worse? – I remember they tried me on all different types, of diets even before when I saw, the Gastroenterologist they were like a low acid diet, and everything like that, but I wasn't really, cognoscente of different foods then, I think I was just too young

(laughing) – Right, at that point Right you were so young – And did you feel some bloating with the pain? – Oh my goodness yes (laughing) – A lot of bloating? Yes, okay – I would look pregnant

– You felt like you looked pregnant? – Yes – And any constipation with it? – Probably from different medications they put me on, yeah – And any urinary urgency with that? – Yes, yes, yep – Okay got it – A lot of urinary problems as well, I feel like that's all mixed in

– Okay, yes – With it, yeah – Yes, definitely (laughing) – And during certain times of the day did it feel different? Or was it more within certain times of the month? Like when you woke up in the morning, or at night was there anything that made it feel worse? Activity or no? – Usually at night was my time, now it's changed, as I've gotten older, but night time it was the worst – It was the worst

– Yes, yes – Okay, got it Were you able to participate socially? Go out with friends to the Movies? – Sometimes here and there, but not as much as I would've liked My friends were really good about coming to my house, and I would be in the bath-tub like crying, and they would sit in there with me, and just try and make me laugh and hold my hand, and they're really supportive or lay in bed with me, while I used my heating pad, they were right there with me through it all – So it sounds like heat and warm bath's, are what made you feel better

– Yes and a good episode of Buffy (laughing) – Okay and then how many surgeries did you have in total? – Total? So I'm 27 now, I've had 12 surgeries – 12 – Yes – Okay

– And my last surgery was in 2015 – Okay – Yes and I had when I was 17, I went to, I was breeching out, because none of the surgeries were working It's very hard as we know – Correct, it's challenging, very hard

– To find the right Excision Specialist, and even then it's not a guarantee, and I found I went to Atlanta to a Specialist, and they did one surgery when I was 16, and then I went back because it didn't help And when I was 17 they did a partial hysterectomy – Okay – Yes – And that helped

– And that helped you – Yes And I was able to then Graduate, I was able to go to College, but that lasted for about a year – For a year, okay – And that's when I think, after that surgery I started realizing more different pains

– What pains came then after? – Inside – Internal – Internal pain and I didn't know anything, about Pelvic Floor Physical Therapy, or anything like that that was around in 2009 – I see, and that was your first time you had tried, Pelvic Floor Physical Therapy? – No, I just didn't know about it – It wasn't an option

(laughing) You didn't hear about it – Yeah, no – And when did you first hear about, Pelvic Floor Physical Therapy? – I heard about in 2014 – 2014 Okay – I just left Law School, I had to take a Medical Leave, because the pain was just too bad, and I knew I needed another surgery, and that was the first time someone brought it up to me, and I started looking into it

– Okay, great So you tried it then? – Yes – That's great – Everything together helps, for sure You can't just have surgery and expect amazing results

– Right It's the entire package (laughing) – Yep – A couple of questions Do you ever have a history of pain with tampon use? Do you remember? – Yes

– Did that ever bother you? – Yes – Yeah that's a classic Yes okay – It was very difficult, to do – Unable to do it

– Yes – I see, okay – I did but – But it was not comfortable – No

Yeah – Okay – What about any discomfort with any Gynecological Speculum exams or trans-vaginal ultrasounds, patients say hurt them? – Yes, that was I was 14 for my first one, so yeah It was very painful

– Very painful – Yes Anytime I had to go, I was dreading it – Okay, okay, got it And then with the Pelvic Floor Physical Therapy, what else have you done? Have you done any stretching or yoga with it? – Some yoga DVD's that center around Endometriosis, I always should be doing more I feel like, walking, I can go hiking up where I live

– Great And medication wise through the history of your pelvic pain – Yeah – Can we go through that? What did you first start off with in terms of medications, and what age were you? – Might be hard to remember (laughing) I know I did a round of Lupron shots

– Okay – When I was 16, it was after my first Endometriosis surgery – Okay So the hormonal? – Yes so I was in menopause like at school, having hot flashes, when I was like 16-years old, about 15 or 16 – Okay

– Yeah, that was interesting (laughing) and I've been on birth control ever since I was diagnosed – Ever since – Yes and different ones I was on LoSeasonique, now I'm on Lo Ovral so that seems to help

– Good, okay Right so you've been through the hormonal medications – Yes – And what about any other medications, in terms of your pain have you tried many, of the non-steroidal anti-inflammatories like Ibuprofen – Oh yes

– At what age did you require those? – When I was 14 – Starting at 14 – Yeah – Okay, so started with Ibuprofen? – Yes, yep – Okay and then when that wasn't enough, you've gone through multiple medications

– Yes for sure – Okay – All different types, so a lot of them would make you too sick and everything, like that so it's really difficult, but the vaginal Valium has been very helpful – Good, yes That's great the muscle relaxer, for those Pelvic Floor muscles

– It goes straight to the muscles, and doesn't affect your mind or anything – No, that's great – So it was yeah, helps calm everything down for sure – Good – And they're injections, that with Pelvic Floor Physical Therapy, the injections and seeing a Specialist, all works perfectly

– Good And what about have you tried any Meditation? Tried any breathing or meditation? – I have yes A little bit, I don't do it everyday – It's hard right? – I know, but I've read a few books on it and I used to, when I was in the really bad flare when I left Law School, I was trying everything so I was doing whatever I could – Great, great

How about Nutrition, have you found anything in Nutrition, that helps you? – Yes, being Gluten free – Gluten free – Yes, really helps and you'll notice a significant difference so Gluten free, try to stay away from coffee, but I still have, I used to drink a lot more coffee, but now I'll have like one cup – Does it bother your bladder? – Yes – The coffee? – Yes

– Seems to flame it up a bit and so does any carbonation – Irritate – Yep – Okay so the Gluten free has helped you a lot – I stay away from acidic juices and things like that, no ice tea, no lemonade, no orange juice

– So almost the Interstitial Cystitis Diet – Probably – 'cause that combinations great – Yeah – Good

Now what would be one thing you wish that at age 13 or 14, that you had known, that you would want other patients to know, who are maybe going through something similar, to what you went through – There's a lot, that's a good question That it's complicated, and there can never be a miracle surgery, and I feel like we all just think maybe this surgery, will be the one, you know and that gets stuck in your mind So I think that you have to realize that you can't just, see a specialist you also need to integrate all these, other types of therapy into your life, in order too feel better, and fix every area that needs to be fixed – Right

– So – Right – And just that it will get better (laughing) – It'll get better – Yes and there's going to be times where I do feel good, and there's going to be times where I don't feel good

– And understanding that – Yes – And what would be something to the Medical Practitioners, and Researchers out there, for Pelvic pain and Endometriosis, what would be something that you would hope for, or hope that they would concentrate on? Is there anything that you would, if you could ask them to focus on? – I feel like it's a devastating disease, so I'd just ask them to try and do everything they can, I know and get the conversation going, but also be real with your patients, you know, tell them you know it's not going to be a guarantee, that you're going to feel better and just give them, all the options Like, I never had all the information, now that I'm older I'm learning more, and I think the conversation is growing, about Endometriosis and all the different types, of Pelvic disorders, but the fact that I should've had, Pelvic Physical Therapy right, after my hysterectomy, I've never been told about it, so I think just everyone coming together and informing their patients or even, I wish that maybe I was directed, to different Doctors too, you know if it wasn't working with one, if they could give me a referral, you know just to help – Definitely

– And definitely if we can find a medication, or some type of cure – Right (laughing) – That's the ideal thing Instead of just you know no-one else is going through, 12 surgeries and a hysterectomy at 17, it's so crazy to me that I even have to say that – Right

And what would be some ideas to help us, in the medical field raise patient awareness, any other ideas you would have? Or any comments on that? 'Cause awareness is the key – Oh it is – It's empowering for the patients to understand, and have more knowledge about what's going on – Yes I think getting patients more involved, I think your practice that's just centered around Pelvic pain is perfect I feel like that's not out there a lot

So I think getting patients involved in creating, these events and what they would like to get out of it, and what they would like to hear and different techniques or therapies that are out there, so I think that's really important, to get patients involved, and maybe even get the Doctor's together more – Right – Kind of brainstorm maybe, I don't know So if they have connections you could refer patients, 'Oh I know this person', you can go here So just different options, I think would be the best, I would hope

– So how are you doing now days? – I'm doing great Yes – Perfect – Because of you – So do you have some flare-ups once in a while? And if you do flare, how do you deal with those flare-ups? – So I do tend to have flare-ups still, I still have one ovary left so I can ovulate, and if I just overexert myself, if I lift something or have different activities, you never know, so I will take a bath, take showers, use my heating pad, I try to take it easy, but also I noticed getting myself out, and texting a friend and going out for a walk will help too

So even if I don't want to be activate, I still try to get myself out there, 'cause after I do feel a little bit better – Right, with activity you have increased blood flow, and that a lot of times will help the pain and discomfort, particularly low-impact activity, such as a walk, or getting in the water – swim, or even a warm bath, the idea is some heat, and then some blood flow is a nice combination – Even ice packs too – Ice Definitely so the ice will help decrease inflammation, so it's almost like taking a couple of Advil, then the heat will help relax the muscles, so it's almost like taking a muscle relaxer, so it's a nice, natural way to decrease inflammation, and relax the muscles without medication

I usually say to start with the ice for 10-15 minutes, and then follow it with a nice heat for another, 10-15 minutes – Gotcha, yeah that seems to help a lot I feel like most people use heat just to get relief, I think you know that with Endo patients – Yes with the heat, the heating is big – I burnt my stomach when I was younger

– I've seen that quite often, the burn marks But you can combine them, yeah you can do both it's okay – Yes, a happy medium and there will be a day, where you just have to say okay, I can lay in bed today, and take it easy, if it's just too much so And then I'll use the vaginal suppository that'll help – The vaginal suppositories okay

And do you find sometimes doing either stretching or yoga, or some of your physical therapy home program helps you too? – Yep I'll do simple like, I don't know the pose, but like where you just have your legs like laid flat – Yep With open and lay flat – Yep, and then I'll put pressure just because it feels better, have my cat laying on me or something – Put some pressure on it

– Yes – Yeah – Yeah the pressure does help, it almost distracts your nerves – Yeah – That's what the pressure's doing

– Oh really? – So it distracts the nerves that cause pain So it's a distraction, so you're feeling a different sensation going up into the stomach, cord and brain and it makes you feel better – Oh I always wondered, like I would put one of my Law School text books on my stomach (laughing) I never knew why but I was like, it feels better – Yeah it's a different sort of sensation, so it's crowding the signals which is a good thing

– Oh okay, cool Learning something new – Have you ever tried a TENS unit ever at home, a home TENS unit? – Not at home, at Physical Therapy they've tried it – Does it help a bit? – That was when I needed surgery so I can't really – It's always a challenge

– So I didn't really, I couldn't tell – Right okay – I think they didn't put it directly on my stomach, they would put it – Posterior, on your back – Yes

– Yeah, got it – I think I even went for before my surgery, like a trial to put the TENS unit in your back, but that didn't help – That didn't help Yeah, that's what you call Neuromodulation, sometimes they can, it's like a TENS unit, but they leave it inside you and it can help modulate, the nerves that cause pain, similar concept to the text book But yeah, it didn't help you

– Yeah, which was a, you know you feel it all throughout your legs and everything but no, it didn't help I talked to a few other people that have tried it, and it hasn't helped them either, so I don't really think that's the answer, like permanently, 'cause once you put it in you can't take it out – Right So you're feeling great and you're, you know what are your plans for school and work – So I'm feeling really good right now, I'm doing the best I've been in the last three-years, so I feel like I'm getting parts of my life back, that I really missed

And yeah, I plan on going to school for Acupuncture, so hopefully I can help out patients with Pelvic pain, and give back a little bit – Amazing – Hopefully it'll work – Well you're doing so well now, for the past couple of years two-and-a-half to three years, which is amazing What do you think was the turning point of, really starting to turn the corner and function, and go to social functions, go to work, really live a higher quality of life

– Definitely I'm doing so much better, I think the turning point was when I was referred to you, by a mutual friend, I met you at the Boston Ball – Right, that's when we first met – And my friend Kelly was seeing you, and so when I went to see you that was the best decision I ever made and yeah from there, it took about, I was doing two injections a month, for I think about a year and it does take time, but when you stick with it, now I'm doing amazing, even as the months go on I'm still doing better – That's great, great And you're combining injections with, the Pelvic Floor Physical Therapy

– Yes, with Pelvic Floor Physical Therapy and the nutrition, and you just really listen to your body and if you do flare, try not to freak out and you know, because sometimes you're like ah-oh, I'm having these symptoms again, what do I do? But to listen to your body, I take notes as well, yes, to see a pattern or anything, and I try to catch it early in your office – Right – And see what I have to do to take care of it It's a lot about self-care, and really listening to your body – Great, great

And now do you feel the different sensations, with a flare-up versus when the sensation when you feel you may need another excision surgery, does it feel different to you? – It does feel different, yes – Are you able to decipher? – I can decipher, so when I need a surgery it's intense pain, constantly, all the time, and it's a different type of pain, it's not pelvic floor pain, so after the surgery, and going through my surgery in 2015, and then starting to see, Pelvic Floor Physical Therapist, and then doing the injections, you really start to know the different parts more, if that makes sense, you're more aware of the different pains, and it does feel differently, so it's just more intense, and I will know if I need to get surgery or not – Nothings relieving it, like right – Yes – You take your warm bath, you go for your walk, you see the Physical Therapist, you see me, try vaginal suppository and really monitor your diet, but you'll still have severe, sharp pain

– Exactly – Yeah – Yeah And you're not able to function – And even sleep does it help? Does it stop you from sleeping as well when it's that bad? – Yes

– Right – Pretty much everything – Right (laughing) – Okay, got it – So, I used to take a lot of Advil PM

– Yes, to help sleep – Yes – Yep I've heard that very often, okay – Try and you know, it helps with the pain, and it makes you fall asleep, so you can just get some sense of sleep, but I was still waking up, and probably taking eight bath's in a day – Okay – And that's when it's time for surgery

– Yeah, okay Yeah a lot of it really is understanding your body, and having a great team of Specialists, like you do, with to kind of with the Pelvic Floor Physical Therapy, knowledge of Nutrition and Exercise, a lot of it is Education and Knowledge, that it's great that you have and are taking care, of yourself it's so important – Yeah, it really is, you have to listen to your self, and listen to your Doctors, and I'm just lucky that I have, all the Specialists and Doctors that I have So I'm happy – Well Julie thank you so much for coming in, I really, really appreciate you sharing your story, and helping others who may be going through this, understand that they're not alone, there is help out there, there is support from patients like you

– Thank you for having me, yes I want everyone to know, there is hope and not to give up and there is so much, support out there and to just really listen to yourself and things will get better – Great, thank you – Thanks for coming, not thanks for coming, thank you for having me (laughing) – Thank you so much for joining us Now I'd like to hear from you

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