Endo Story – Devon

When we share our stories, we empower and encourage other women. The pain is not all in your head, it is real. Endometriosis is real and you are not alone.

Devon is an endo warrior who lives in Yorkshire, UK. She was 25 years old when she was diagnosed with Endometriosis, now a year later she tells her story. This story is a reblog from Bloomin’ Uterus.

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Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologize for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right-hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first, I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have a 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was, in fact, bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favorite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following its removal, I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date, I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopies should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently, I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey, it has felt like The Blind Leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

Thank you for sharing your story Devon, I could relate with many parts. I pray that the docs find a cure, Lord knows, millions of women need it. Grace, peace, and strength unto you.

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31 Days of Endo ~ Tara Langdale-Schmidt

Day 18 🙂

One of the symptoms that Endowarriors may experience is pain during or after sex. The pain can turn a previously enjoyable experience into an emotionally devastating moment.

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Tara Langdale-Schmidt is an endo warrior who has created a non-surgical intervention for painful sex. Necessity is. She shared her story with Lisa of Bloomin’ Uterus in November 2016.

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Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

Endometriosis caused pain during sex, it was an uncomfortable feeling deep inside that I became used to. My sex life was normal besides the endometriosis pain. Initial penetration was never painful until I started to experience a different kind of pain, a very sharp pain I had never felt before.

My nightmare experience with sexual pain began mildly and I started going downhill in 2010. It began as mild pain during intercourse in my vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after having sex. Nothing helped the pain or made it go away. I only told my best friends, and they had never heard of anything like what I was experiencing. Neither had my fiancé, Jason.

I didn’t know it then, but I was suffering from the excruciating pain of Vulvodynia. The pain, both physical, emotional and mental, was agonizing, made it impossible to enjoy sexual intimacy with my future husband and impacted my quality of life for four long years. The burning and stabbing escalated and I would not have sex at all with Jason. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed at the thought of never being able to have enjoyable sex again.

My primary gynecologist told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, I still didn’t have a diagnosis and I was confused and worried about what was causing the pain. I actually asked my doctor if I had something called Vulvodynia because I found it on the internet. He agreed that is probably was Vulvodynia. He wanted me to try the numbing creams and after that, he called several doctors and told me none of them had a treatment plan for Vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me. I was given a prescription for Gabapentin cream and Ketamine creams. These are compounded creams, that might help the nerve pain, I was told to use twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections which only lasted an hour and left me hurting from the needle. I had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that maybe the pain resulted from scar tissue. My doctor also thought it could be scar tissue as well.

After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. I did not like these options. I do not like taking painkillers and especially not before sex. After suffering for so long and getting no answers I decided to take matters into my own hands. I had to take action.

From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had a “lightbulb moment” idea to incorporate neodymium magnets into a dilator set for pelvic pain. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal. I had just started using the dilator for the first time about three weeks prior to my wedding and I was actually able to enjoy my wedding night. I didn’t think that was going to happen. My husband, who was so supportive, was as thrilled. I was able to have sex without pain.

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Due to my reduction in pain and positive feedback after speaking to doctors about my magnetic dilator treatment and pain reduction, I knew I had no option but to create a startup company dedicated to helping other women with pelvic pain. With my personal pain issues resolved, I knew I had to help other women. Working with my good friend and business partner Robert Smithson, we together founded VuVatech, a company based in Sarasota, Fl. dedicated to helping the estimated one-in-seven women in the US who suffer from pelvic, vulvar pain. With the help of medical experts, we invented a medical device, the VuVa Magnetic Vaginal Dilator that has proven to relieve pelvic pain and sexual discomfort and has improved the lives of women seeking sexual normalcy.

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VuVa Magnetic Vaginal Dilators are a new, non-surgical approach to helping millions of women suffering from multiple pelvic pain conditions and sexual comfort. The dilator therapy can also be incorporated into treatment plans for other conditions such as Vaginismus, Vulvar Vestibulitis, Dyspareunia, Menopause, Vaginal Stenosis, Vaginal Atrophy and Vaginal Dryness. Many women suffering from these pelvic pain conditions have been placed on heavy pain medications, anti-depressants or have been advised to have invasive surgeries with low success rates.

Our VuVa Dilators offer a low cost, safe, non-invasive treatment option to renew the sexual desire and comfort women deserve. Since VuVa Dilators became available on the market in late 2015, we have only used social media, google ads and pelvic pain forums to direct traffic to our website. After selling over one thousand dilators and receiving positive feedback, it validated our decision to perform clinical trials. Clinical trials have provided beyond positive results by reducing nerve pain in subjects, so much so, that each subject purchased a set of VuVa dilators at the conclusion of the study.

Today, sex life with my husband is great. If I use the dilator twenty minutes before we have sex, I can have close to pain free intercourse. During my research, I have found Vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.

 

Words of Advice for Us: Using a magnetic vaginal dilator changed my sex life. My overall message to women in pain: there is hope, there are answers, you do not have to suffer. I’m a perfect example. Keep searching for what helps “You”.

If you wish to contact Tara, you can email her here.  Or you can get more information about Vuva magnetic dilators here: http://www.vuvatech.com/.

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Tara, thank you for sharing your story and for reminding us that we do not have to suffer in silence. It is great to see that you are offering a practical solution that other endowarriors can try. We hope we find a cure soon. Here’s to more happy moments, and to slowly reclaiming what endo has stolen from us.