Potential endo at age 19 :(

[Danceloverx]

Hi I just wanted to share my story of my suspected endometriosis ( I’m still in the early stages of figuring it all out ) and I’d appreciate any opinions or advice.

I’m 19 years old and first started my period when I was 12. My periods were always normal, but slightly heavier and more painful than most of my friends.

I’ve been on combined contraceptive pills for years and they have worked perfectly, I’ve had regular, light periods with no pain.

For the past 6 months, at least once a month, ranging from 3-6 week intervals, I get 3 days of really bad pain that follows the same pattern. It starts with abdominal and back ache which feels like constant pressure and then moves down to my pelvic area where it’s extremely painful to move, cough etc.

Other than these 3 days per month I have no pain what so ever, and the pain does not seem to tie in with my periods at all.

I’ve also had irregular bleeding and spotting (but I have been switching between pills).

Thanks to my parents I’ve gone private to see a gynaecologist who suspects endometriosis and has offered me a laparoscopy to find out- however this has been cancelled for now due to Coronavirus.

I know my symptoms don’t seem as bad as a lot of other people but I am really scared.

I’ve searched for hours and hours online about endometriosis and have become really depressed and worried. All I seem to read is ‘fertility problems’, ‘constant pain’, ‘incurable’ which i am struggling to deal with, with only being just turned 19.

I’m just hoping to hear any opinions or advice (preferably positive please to help put my mind at ease 😂) whether this sounds like endometriosis, any info on laparoscopies or any more positive stories.

Thank you xx

[Danceloverx]

also had tests and ultrasounds and everything’s come back all clear. Only thing was low b12 from blood test

[Moon_maiden]

Try not to worry about what might or might not be there at the moment. Very easy for this to happen especially at the moment with what’s going on. There are plenty of women who’ve gone on to have children from what I’ve read. I came across a list of famous women the other day.

The operation wasn’t as bad as I thought it might be. I’m a tad older, had never had an op, was very nervous, but was plain sailing.

I was told, and research backed up, that it is the best way to see if it’s there. Did the consultant mention treatment if they did see any?

If money isn’t an issue might be worth asking for MRI first to check anything else, this won’t necessarily show endometriosis though. You’re in a fantastic position that it hasn’t taken long to find someone that has listened and taken notice straight away 😀.

Have your parents had any type of operation , the basis will be the same. I’m glad I went through with it to get answers. If there’s specifics please ask. I can’t help on fertility though, sorry.

[Danceloverx in reply to Moon_maiden]

Hey thank you so much for replying

The consultant did say if he found any he would would remove it during the operation which is good.

From what I’ve read though it always seems to come back which worries me.

He also suggested I continue on my combined pill.

I’ll definitely look into an MRI as this seems to be the only thing I haven’t had done.

Do you mind me asking if endo was found during your operation? And if so how have you managed since?

[Moon_maiden in reply to Danceloverx]

Hi, yes it was and treated with Helica. I had it pelvis and bowel area. I’m on six jabs of Zoladex, one every four weeks, it’s supposed to bring on menopause and reduce pain, etc., as unfortunately little changed in symptoms, then MRI. I do have fibroids as well, no one knows if they are actually an issue.

Please don’t let my experience worry you, I’m 52 and none of the doctors can really get their head around a diagnosis at my age. Most assume I’ve already started menopause. I think even the consultant was surprised, but he said it could be another five years or so.

That’s why it’s important for you to keep on top of this and not leave it for years. Hopefully they will come up with a cure soon.

Let us know how you get on and if I can help with queries please let me know. I’m no expert though. 😊

[Linley]

Hi!

I am only a lay person who has had Endo for many years so I cannot say to you it is Endo as I am not qualified. What I can tell you is the following

Fertility-yes if you do have Endo some people do find it harder to conceive, but out of 3 Endo friends two went onto have children.

Incurable-again my two Endo friends had no probs after they had children. I was the one that had no children and can tell you that my Endo was controlled by Laps to tidy me up and the right meds.

Constant pain-for me pain was controlled with the right meds.

Endo treatment has come along way since I was 1st diagnosed with it so please try not to worry too much until you know for sure. If you still feel you would like to talk further contact Endometriosis UK, I found them most helpful. Keep Safe

[Danceloverx in reply to Linley]

Thank you !

[Hidden]

Hi Danceloverx,

I hope you're well.

Similarly, I am not a Dr., but a person with a diagnosis of endometriosis and so my opinion is not fact.

Some of the symptoms you describe, like the constant pressure in your abdomen and back and then pain in your pelvis, sound like the early symptoms I had of endometriosis. I was diagnosed in 2016 and I had some of these symptoms for 1.5 years before and in the first couple of years.

I think endometriosis is different in different women and it is a progressive disease. My journey doesn't necessarily look the same as your journey. I would suggest that when reading the posts you might not find that everything applies to you, for example, I have sometimes read posts and noticed that dates line up to things happening within a couple of years, whereas I had assumed if I hadn't looked at them, that this was how this person's condition had been for years.

I hope you will find being young a positive thing and that you will find you have a slower progression. I have found diet and exercise very useful to managing the condition. Regular exercise can reduce the number of days I have pain and the amount of time I have pain too. There is no 'one' endometriosis diet, however reducing inflammatory foods like alcohol, sugary foods, red meat, refined flour and processed food should make a difference. This will help your overall health, with the exercise and keep you as well as you can be with endometriosis.

I hope this is more positive feedback than you feel that this is one of the better things you have read on the forum.

Best wishes,

jo_nano

[Danceloverx]

Hey thanks for replying?

Can I ask if your symptoms got worse over time? Or if treatment using birth control or lap made any difference?

I worry my pain will get more constant as currently I only get 3 bad days a month which I worry will become more common😣.

Also was your pain around the time you got your period or was it unrelated?

Thanks xx