Possible endometriosis
Hi all,
I am new to this forum. I’m a 34 year old woman who has always had very painful periods to the extent of passing out and throwing up due to the pain. Over the last year my periods have become heavier than what I considered usual (have always been heavy but told it’s normal?) and started having pain during/after sex, pain in my lower back, hip that travels down my leg, pain in left side of pelvis this pain is will happen during my period and after too and has become regular.
After years of me trying to get my GP and a gynaecologist via NHS to investigate with no avail I made the decision to go private after a finding of an intramural fibroid. I was booked in for a specialist U/S to see if I have deep endometriosis which could not be seen and during my follow up I was advised only two options available for me which is hormonal management or surgery but the specialist wants me to monitor my periods over the next 3 months to see if they remain painful and heavy.
Aside from the fibroid, I have a small ovarian cyst and Polycystic ovaries (PCO and not PCOS).
Can anyone offer advice as to how they were diagnosed and if they had an ultrasound that showed endo? Thanks in advance!
Hi
. Welcome to the community! I'm glad you found us. I wish your NHS doctors had been more compassionate and responsive so you wouldn't be forced to pay for private care. That seems unfair. Unfortunately, the only way to definitely diagnose endometriosis is through laparoscopy. Ultrasounds and MRIs cannot provide enough information. Here is an article about the diagnostic process: https://endometriosis.net/diagnosis. Many people do try hormonal treatment first, often because they want to avoid the cost and trauma of surgery, so I see why your doctor offered that option. How do you feel about waiting three months or taking hormones as opposed to surgery? We are not medical experts, but my biggest concern for you, given your pain, would be the possiblity that entrometrial tissue is causing damage if you do have endometriosis. Is that something your specialist addressed? I hope others chime in here with their own experiences. Please keep us posted as to how you are doing and what you have decided. I will be thinking of you. - Lori (Team Member) Hi Lori,
Thank you so much for taking your time to reply to my message, I really appreciate it. Fortunately for me, this is covered via my work private health insurance via Bupa so I’m not actually covering any costs for appointments or possible surgery.
Just to mention during my scan it was visible that my organs were mobile and not stuck together which is a good sign? But from research I’ve found that doesn’t always mean you don’t have endometriosis (please correct me if I am wrong) the reason to wait 3 months was due to me miscarrying last month and only just had my first period after miscarriage starting yesterday so the specialist didn’t want to count this period with pain as the pain considered different (although it feels like normally would but more painful due to miscarriage)
I honestly don’t want to try hormones, I have been put on it before and it always made me feel horrible (side effects) and I do not like the long term effects it could give.
The specialist concern was if we do surgery he is worried how I may feel if they cannot find endometriosis as he always sends his paitents to the gynaecologically ultrasound centre in Harley street and he finds those tests are accurate, I’m not sure how I feel to be honest! I would rather have surgery for diagnostic purposes as I am at my wits end with constant pain.Hi
. I am so sorry for your loss. To deal with the miscarriage and now the pain and discomfort of your health issues is a lot to contend with at once. My heart goes out to you. I can see why your doctor wants to wait three months. Your body needs time to get back to whatever normal is for you.
Hormones are not for everyone and they are not alway effective. If you do decide on surgery and your doctor finds endometrial tissue outside your uterus, he will remove it, which should ease your pain, at least for a while. There are no guarentees, however. Some people have surgeries every few years to remove tissue.
It is a good sign that your doctor found no adhesions, but you are correct in that it doesn't mean you don't have endometriosis. My daughter had no adhesions, but her doctor found external tissue growth in eight places during surgery. None of that tissue showed on an ultrasound. She was diagnosed after a cyst filled with blood and torqued her ovary, causing so much pain that she ended up in the ER. Thankfully, her ovary survived.
I understand your specialist's concern, but no matter what you do, the pain will not likely ease without treatment and you won't know for certain whether you are dealing with endometriosis without surgery. Given that you just had a miscarriage and that your hormones are likely to be a bit jumbled for the next six weeks, do you think it might help to wait at least that long to make a decision? Here is an article about alternative treatments: https://endometriosis.net/living/alternative-treatments. Maybe you will find something that helps ease the pain while you decide on the next step. Gentle hugs. - Lori (Team Member)
