Worried about Endometriosis

[RemiLuma]

So on the 14th of March this year I went to see my doctor about my periods, and after doing a smear test, she said she thinks it's Endometriosis. However, she couldn't rule of that it could be cancer. So on Monday the 27th I'm going to see a gynaecologist, after making it an urgent matter. To just add to this, she found a red circle on my cervix.

She did tests to rule out STD'S, and they all came back negative. So now I'm worrying about endometriosis. Because I don't actually know what it is and since I'm only 22, I feel like my chances of having kids are slowly fading out. Even though she mentioned a chance of it being cancer, I'm trying to focus more on the other

What can I expect from the gynaecologist appointment? And what does having endometriosis actually mean?

Here is a list of my symptoms:

• Irregular periods - last 10-14 days and have them 2 a month
• Heavy and medium blood flow
• Bleeding in-between periods
• Pain in lower tummy and back during and leading up to period
• Sometimes painful to pee
• Feeling sick
• Constantly getting constipation during period
• Feeling more tired when on period and lead up to it
• Feeling faint everyday
• Bloating
• had a 3-month period
• mood swings
• contraception has no effect and goes back to my irregular cycle
• pain during sex
• back and pelvic pain
• Sharp pain in stomach when I have a poo

I have endo and there is zero possibility she can presume endo from a smear.

From your gynae appointment they will take a full history, so everything you have described they will want to know. They will ask about pain during/after sex too. They might have a scanner in the room and do a transvaginal ultrasound at the appointment to see how your uterus looks and to check if there are any noticeable endometriomas on your ovaries (chocolate cysts)

A lot of your symptoms overlap with PCOS so they may do a full hormonal panel of bloods to see what your female hormones are doing (that would explain the contraception not stopping your cycle).

They may suggest a diagnostic laparoscopic procedure to have a look inside as that's the gold standard for diagnosis (wait times are awful though, I've been waiting years) however newer MRI machines can detect endometriosis with extreme accuracy.

The treatment is quite rubbish, hormonal medications such as the mini pill or depo- provera seem to be the first line (along with pain meds) they also suggest a mirena IUD to "turn off" your hormones and give your reproductive organs a rest to heal. All of those have side effects. The most effective treatment is excision, which not many consultants are skilled at doing well, with reoccurrence of the disease quite high.

I am awaiting big surgery as it involves my bladder and bowel but luckily I was referred to Dr Tom Aust in the north west who is a leading endo specialist one of the best in the country.

Thank you so much that makes me feel better about Monday. Do I mention that the pain I experience has been something I've suffered with has been painful since I was 12, but has gotten worse in the past year?

Mention everything. Your symptoms are very similar to mine.

I have PCOS and Endo. I'm currently recovering from laparoscopic ovarian cystectomy, endo adhesiotomy, and dye test.

Previously I was treated with medication.

Good luck!

It may well be you have both PCOS (that is a common cause of irregular periods) and endometriosis. I have both but it is possible to become an parent.

Ongoing painful periods and deep pain during sex is one of the indicators of endometriosis and your other symptoms could be all attributed to endometriosis.

Indeed mention everything. I would also keep a daily pain and symptom diary if you do not already do this. If you have kept such a diary bring this with you to the appointment. I would also suggest you write down anything you want to ask them well ahead of time, that way you won’t forget. You will need to be persistent in order to get answers.

@RemiLuma yeah mention your entire menstrual history, endo is progressive and gets worse, when it attaches organs to each other you can suddenly have pain you never experienced previously. Pain on weeing and pain on passing bowel movements are hallmark symptoms.

I have endo. I had an operation to remove the worst bits in my uterus.

Was able to conceive one DC and then had another operation after giving birth to remove more.

This helped massively. But my symptoms are much like yours.

Best of luck x