How many of you ladies have suffered with Endometriosis prior to your diagnosis? X
Endometriosis: How many of you ladies have... - My Ovacome
Endometriosis
Written by
Jessica-DianeB
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Not me.
I did!
I had endometriosis without knowing it prior to debulking surgery.
I didn't know I had it until they took out my ovary. They're unsure whether my cancer arose from it. It could also possibly be a recurrence from a previous diagnosis. Either way, I'm being treated for both scenarios which is unfortunate.
All the best with your treatments xx
Me.
I had severe endometriosis found when I had my Borderline Tumor taken out in 2013. I'd always been VERY symptomatic and had periods from hell, but everyone just kept telling me it was normal.
I ended up having all endometriosis excised during my second staging surgery with my second tumor.
Thank you all for your reply. I'm convinced there is a link, so curious to see how many people are affected.
It could be an early detection sign. I was told I was to you've to have OC. But was diagnosed at 18 with endo, with my history of endo, perhaps when I went to the dr in Feb complaining of further pains ( I told them it was a different pain to endo ) that could have warrented blood tests if there was a proven link. To late for me but not other woman!
Or my daughters! X
I didn't!
I did. X
I have had endometriosis since my early 20's-I'm now 65. I had surgery twice back then for ovarian cysts and was told that endometriosis doesn't lead to ovarian cancer-I don't know whether ideas have changed since then. I do know that it can cause a raised CA125.
It's definitely possible for cancer to arise from endometriosis. Mine is specifically a low grade endometrioid adenocarcinoma. But it was large and stuck to my colon. No other signs of spread thankfully. Ironically, I was originally diagnosed with the same cancer type and grade in my uterus two years ago. I also had complex hyperplasia with atypia. The uterine cancer likely arose from the hyperplasia. Keep in mind both conditions are also very estrogen sensitive in my case. In hindsight I should have removed both ovaries along with my uterus. But I left one behind because it's often an option for women who get a low grade uterine cancer at 40 and under. Too late. Hindsight 20-20. But even with careful monitoring by my doctors after th first cancer, they still didn't catch it until I started having severe bowel movements for a month and my primary care doctor ordered an ultrasound. My cancer doctors were floored. Anyway, they can't rule out a recurrence. It could be a new ovarian cancer unrelated to the endometriosis. Or finally, it could have also arisen from endometriosis. In any case, all scenarios are rare. Two tumor boards and one international conference review later of my case and no real conclusions although some doctors have personally told me they think it's from the endometriosis. I'm hoping for the last scenario and going through treatments for all of three scenarios to cover my bases. Good luck to you all.
I did .over 20 years
I did
Hi it is known to have a connection to OC. OC also connected to infertility treatment which I was on after the birth of my son as couldn't conceive again and was put on Clomid (multiple birth drug) that didn't work but ended up with an ectopic pregnancy.. hindsight is wonderful, I'd never have agreed to this. All the best Love Michelle x
I too have endometriosis and I also took clomid afte endo left me infertile xx
I took Clomid too and also had an ectopic. X
I did as well but didn't know until they operated and found both endometriosis, borderline and low grade areas.
There is a link. For me I didnt have symptoms of endometriosis or cancer but had lots of symptoms of hormonal imbalances. Both endometriosis and low grade OC is fed by oestrogen. For me that's the source of my issues.
Good luck and all the best
Mxx
yes i had twp operations to remove large cysts (grapefruit size) . last op was 2012 wen i asked for hysterectomy but was refused ..... many regrets re that .
Not me I am afraid , I may have had it but dont know really,
I had endo. I remember having terrible pains round the pelvic area before having surgery folloiwed by Chemo. The GP said the endo would go away after the menopause. I have not been that happy with the GPs I have seen.
I did not suffer from endometriosis but was diagnosed with endometrioid cancer cyst in left ovary. I was told that sometimes endometriosis can affect only the ovary and not the entire uterus.
Having said that , i have not yet had my biopsy to understand whether i have any other signs of endometriosis
Good luck with your biopsy xx
I suffered for many years with severe pain during periods, heavy bleeding etc. Over time it got to the point where the pain was a part of daily life. I went to the doctors many times and was dismissed everytime, they insisted it was a mixture of IBS and just bad periods.
Eventually I moved and got a new Doctor. I tried again to push for a referral and this time I was referred for a mixture of issues, including a recurrence of a prolapse. I felt totally desperate at this point.
Anyway, I waited almost a year for the appointment and things have just snowballed from there....
Initially it was confirmed that I had a prolapse repair by a 'non specialist '....basically a bodge job! So I was being set up for another operation to repair this.....
Meanwhile...I had scans which confirmed severe and extensive endometriosis, stage 4. I then had a diagnostic laparoscopy Feb 2016. The prolapse was put to the side as this was more urgent.
I then had endometriosis full excision Nov 2016, including removal from my bowel. This was major surgery and I was on hospital for 6 days with a lot of blood loss.
Anyway....totally out of the blue I get called back because my pathology report shows I have a borderline ovarian tumor. It is rare as it is seromucinous. Unfortunately as this was not expected, my surgeon openly drained it ....he thought it was a cyst.
I am now at home recovering again from another laparoscopy Jan 2017. Fortunately the results show no sign of spreading.
I am in a funny place right now. I feel grateful I don't have frank ovarian cancer but I still feel totally shaken up. Everyone is so relieved that 'I am fine now' .....and I don't want to say out loud...'I don't feel so fine'. X
I find it's hard for people to understand. They see you, but they can't see the thoughts inside your head.
Take each day slowly and let it your feelings out if you want to xx
Thank you....yes it's hard to explain to people, especially when actually you can feel different from one day to the next. I feel my diagnosis is complicated....I am trying to be so positive but actually that takes a lot of energy!
I've never written anything in a forum, but today I just wanted to get some of it out. Thanks for reading and replying. I hope you are well x
Yes they think I had it at the age of 13 onwards, but I didn't want laparoscopy. Finally diagnosed age 31. X
I battled for 3 years to get a diagnosis. I'm now 21, and had my first lap September 2016. So I'm 4 years into visiting doctors!
Hi All, I had Endometriosis & never even new. I have had a Hysterectomy so I sympathize with you so much. Your life is controlled with it. To point out just a few, Painful is an understatement as it's so bad. Constant bleeding gushing through all your pads, fainting. I have one son age 30 now but was trying to have another baby but had 16 miscarriages 3 ectopic pregnancies on top of that. Had IVF twice and it worked carrying triplets but lost them after 2 months. This was all down to Endometriosis. I had to have a Hysterectomy and although it tore me apart not being able to have another child, it gave me a life I never new I could have before. Just getting up in the morning going to work without bleeding 2 to 3 weeks a time was all over for me. I felt so happy all the time, no pain, no embarrassing moments. I was given a completely new normal life I never new existed. I have been left with an under active thyroid gland but it's nothing compared to Endometriosis I was suffering.
I am so sorry for you as I have been where you are.
But you can get help without a Hysterectomy so ask your GP for a referral to a specialist as you can get help. All the best I wish you well.
I did! I have only just been told that it looks likely I have it after using the pill for years to help with 'bad periods'.
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