My Story : I am a 20 year old and have been... - Endometriosis UK

Endometriosis UK

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My Story

rhain96 profile image
7 Replies

I am a 20 year old and have been having my periods regularly since I was about 9 years old. My periods were mostly regular, every 4 weeks, but did have a few late and early ones over the years. I have always had period pain, cramp and about a 6 day period. Over the years though, my periods have slowly got more and more intense, painful and heavier. Over the last one and half years they have got worse more quickly and now it’s got to the point I need to do something serious about it. -In late 2014, early 2015 things become pretty intense and the pain was so bad (I was doubled over and crying all night in pain), I ended up going into the hospital to be check the next day. After being checked at the hospital, they just said I had irritable bowel syndrome and sent me home. My periods only got worse, and in April of 2015 the doctors discovered an ovarian cyst on my left ovary. The pain continued and the intense periods, so I returned two months later for another ultrasound. The ovarian cyst had gone.

Since then my periods haven’t improved, they have continued to get worse.

Over the past three months now, I have been getting vaginal bleeding for a couple of days, between my periods. After the bleeding stopped, I go through a few days were I would get vaginal discharge. Then about 7-10 days before my period is due, I started to get period cramps as if I was getting my period. Then when my period did come, they were heavier and more painful than normal. This really got my worried the first time, so I monitored for a couple of months to see what happens. The same thing happening again and again. During my periods over these past few months, the pain was so intense I started to feel sick and lightheaded. I also get diarrhea and constipation around the time of my periods and during my periods. This has happened a lot more recently. Also urinating during my periods can be painful too and make its painful to go toilet. Sometimes after going toilet during my periods, I would get stomach cramps. Also my periods give me intense back pain and even pain into my hips and legs during my periods.

On the 6th September 2016 I visited Gynaecologist, Brad Chittenden (MBChB, MRCOG, FRANZCOG) at the Virtuoso Clinic (virtuosoclinic.co.nz/), and thanks to Brad, got excellent help and service. After a brief discussion and going through my history, he straight out said the I possibly have Endometriosis. He suggested I have a Laparoscopy to have a look, and if Endometriosis was visible, he would remove it and put a Mirena Coil in. Consent for surgery was signed that date, and surgery was three days later on the 9th September.

During surgery he discovered Stage 3 Endometriosis and possibly Adenomyosis, but because the disease as around my bowel, he didn't remove it. The reason being he wanted a Colorectal Surgeon to assist in this, as they specialize in this area. After documenting everything with photos, Brad discussed everything with me and had already spoken to a Colorectal Surgeon (Mark Omundsen), who also is located at the Virtuoso Clinic, to see if he would help with the procedure. Everything was agreed on and Surgery is set for Friday 4th November 2016.

At this present moment, I am still getting over the last surgery, the general anaesthesia and so on. I am looking forward to getting the next surgery over and done with, as this disease has slowly pulled me apart, physically and emotionally.

Everyone out there struggling with Endometriosis, i want to wish you all the very best and pray in hope that you may find relief.

God bless you

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rhain96
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7 Replies
TinaBSheffield45 profile image
TinaBSheffield45

Good luck with your next surgery. A lot of your symptoms over the years, sound similar to what I have been experiencing. I too have recently had a Laparoscopy (2 weeks ago), where they removed Endometriosis. They also found that my bowel was connected to my uterus by a nodule, and have not touched it. They want to do an MRI Scan before they decide whether to do a hysterectomy with bowel surgery. I am just praying that everything settles down. All the best.x

rhain96 profile image
rhain96 in reply to TinaBSheffield45

Thank you, i hope it all goes well too. My uterus and bowel are connected with a nodule so they didn't remove the endometriosis in my first surgery. This second surgery will include a Colorectal Surgeon to help in removing the disease. i look forward to getting this surgery over and done with. Good luck with getting a MRI and more surgery if you have to have more. All the best, keep praying and all the best. xx

TinaBSheffield45 profile image
TinaBSheffield45 in reply to rhain96

Thank you. Good luck to you for your surgery in November.xx

Scooteeder profile image
Scooteeder

I know this might sound a little silly , but I'd just like to let you know that it seems to me that you have handled your situation really well, and that you have done just the right thing. Good on you for keeping your head, staying organized, and seeking out the right diagnosis and treatment.

Endometriosis is not a pleasant disease at all, and it can be very frustrating dealing with it, especially because the illness is invisible - you can look well on the outside, but actually have a heck of a lot of Endo internally, and actually be very unwell. Sadly, some people only seem to believe in illnesses that are clearly visible, so they treat women who have Endo as though they are lying. Added to this is the fact that some medics are not familiar with Endo and its symptoms, so they can easily confuse this illness for another one.

Like you, I have Endo, and it has not been an easy journey to get to this stage. I was also incorrectly treated as though I had Irritable Bowel, and had to fight through several further misdiagnoses before I finally got confirmation that it was Endo that I was dealing with. In all, it took over nine years before I got a correct diagnosis! This can be the case for women with Endo, and if it is, then I guess they just have to really be stubborn and insist they are taken seriously. If you allow yourself to be fobbed-off then chances are you are left at a loss - trust your instincts and keep pushing until you get the CORRECT diagnosis and treatment.

Seems to me that this is what you have done, and as a result you are probably in a pretty good position. I know it may not seem that way - having to face surgery is anything but fun - but, still, at least you know you have Endo, and it's being treated. I've coped with 4 Endo surgeries, including radical excision of Deep Infiltrating Endometriosis - so I think that suggests that we CAN survive and cope. I'm no "Wonderwoman", but I'll be damned if I'm going to let Endo stop me! Sounds like you are pretty resilient, too. You may feel like the illness tries to pull you apart physically and emotionally, but believe me when I say that women who cope with having Endo are tough fighters with a hell of a lot more strength than they give themselves credit for.

So... good on you for being organized and determined. Good on you for seeking the right diagnosis and treatment. You sound like you are on top of things, and have a plan in place to deal with your Endo. You WILL get the next surgery over and done with, just as you have been strong in the past to get you this far. I'm wishing you all the very best, and hope that your surgery goes well, and provides you some relief.

Good luck. E. x

rhain96 profile image
rhain96

Thank you very much for your kind words. Its been rough over the last couple of weeks as my parents and family just treat me like nothing is wrong. I struggling through everyday pain and keep pushing, but can't always do everything they want. They don't understand what is happening to me and how much pain i am in. I try to be happy on the outside, but am screaming on the inside. I look forward to getting my next surgery over and done with, then hopefully things will improve . My surgeon is amazing and very well skilled in Endos and Laparoscopy, so i feel I'm in very safe hands. I meet the Colorectal Surgeon, who will be helping in the surgery, in just over a week. This will help me mentally prepare for the surgery and what they plan to do.

Once again, thank you for your kind words, it a good feeling knowing i can message people online who are going through the same thing as me, as they know what you are going through and can understand you more. I don't talk to my family much now about my pain and what i am going through, as they just don't care and don't think its that bad at all.

Thanks you and God bless you.

Rxx

Monaalex profile image
Monaalex in reply to rhain96

I will be prayig for you my darling, and will pray that your parents will have more understanding of your situation and show you love and support.

God loves you and will privide comfort for you.

God bless you richly xxx

rhain96 profile image
rhain96 in reply to Monaalex

Thank you very much, tonight has been a rough one. I'm counting down days till surgery, I just want it over with. 33 days to go.

God bless you all

Love Rxx.

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