(New here!) Does endometriosis mean daily pain?

[Blondie789]

Hi, I am 19 years old and I've been suffering with severe period pain for about 6 years. I've been sick and almost fainted countless times. Went to my GP last year and was given mefenamic acid, which did nothing even when taken with painkillers. Went back to GP and was put on the pill. Still during pill breaks I'm getting terrible pain. Had a pelvic ultrasound and it came back clear. On the waiting list for the gynecologist (which is apparently 97 weeks here in NI.) I don't really get pain outside of my period/withdrawal bleed (and just milder cramps before I was on the pill when I was ovulating).

Does endo mean daily pain throughout your cycle? The pain during my period is unbearable, pain killers don't work and I can barely walk, but I just don't know if it could be endo because I'm not in pain every day.

Any knowledge would be really appreciated!!

[kelsbels88]

Hi lovely,

The short answer to your question is no. I used to have 10 days a month pain free.

Please feel free to google or look at my posts I had very severe endo which affected my bowel, ovaries and tubes. I had cysts etc it was extensive. But as I said I had 10days give or take where I was a “normal” person.

I used to suffer badly around ovulation and then 3days before my period 4/5 of my period and then 3/4 days after my period. How many days depended on my cycle which with endo used to be a bit irregular.

I would keep a diary which I haven mentioned to others in posts before. Write down everything, scale your pain out of ten, try and describe the pain (not always easy) I personally found that certain foods made the pain worse. I couldn’t have caffeine so tea coffee and my favourite Coca Cola. I had to swap to decaf and full and semi milk. Could only have skimmed.

Keep pushing your drs and as much as it’s hassle if they fob you off ask for another gp or move surgeries. This is not something you should leave. You know your body best and if something isn’t right. I am 33 this year and the one thing I wish now is that I hadn’t waited so long thinking it was ok to be in pain, especially as it has had a massive impact fertility wise.

Please keep pushing don’t let drs fob you off with being too young. They probably aren’t going through what you are and men dnt have a clue unless they are a specialist who know the condition. None of the males took me seriously until I was in my specialists office I think I may have cried because he didn’t make me feel like I was crazy.

Good luck any questions pls ask.

Kelly xxx

[happyseal]

It depends on the person and not even on how severe it is. I have severe endometriosis and I'm not in pain everyday. I'm I pain during my period and I can somewhat manage it with diet,exercise, supplements and pain killers. Every 3months or so I get a flare up and it doesn't matter what I do I'll have a painful period. But I do get more that physical pain. I get physical pain during my period and occasional quick cramp on ovulation. I get spotting almost every day. And the 2 weeks before my period I get horrible pms that gives me Insomnia and really bad mood swings irritability sadness etc etc. So all in all I get about one week a month that I feel that I'm myself and have energy to do things. That is the week after my period. But again the endo specialist told me I have high threshold for pain since I don't have too much pain despite severe endometriosis. Try to listen to your body, track symptoms and when they happen and you'll start finding how yourcycle works.

[Maisy04]

Hi hun, this is weird so crazy to me because everything you’ve said is the exact same for me in most ways. I’m 16 years old I’ve been suffering with awful period pains since I was 13. Having yellow vision, cold sweats, randomly dripping with sweat, blacking out, throwing up so much around 14-20 times a day on my period. They are extremely painful and I cannot bare to take them. I was put on the pill it hasn’t done much. I then like you got put on mefenamic acid medication it helps for about 5-10 minutes if I’m lucky then pain kicks back in in my stomach, thighs and lower back. I have had a pelvic ultrasound and all came back clear too. I’ve seen my gynaecologist but I’ve been too scared and frightened to ask about endometriosis. I am going to in the next following weeks. The pain is only bad 3-5 days before my period and unbearable when I’m on

[Blondie789 in reply to Maisy04]

Wow I relate so much to how you described your experience with mefenamic acid! I remember I would take it and the pain would go for about 15 minutes before coming back! When I called my GP they told me I must be lying because it "always works." It's so reassuring to see you felt the same and good luck at your next appointment!

[Bubblepoppy]

I get everyday pain but I used to get the monthly pain like you first I thought it was just bad periods so I left it years now I'm booked in for a hysterectomy hopefully that works for me, I was on the pill for my endometriosis and I never had a break that did help a little after a month of been on them hope you get seen to soon and pain while on period is much worse tramadol painkillers didn't work on me either xx

[USgalwthendo]

I have stage 4 endo confirmed during lap 7 years ago. I have had period pain since age 14. But it’s only during my period. It’s excruciating. horrible pain is not normal part of menstruation so it is possible you may have endo. I’m glad you are looking into it now. I didn’t start to get help until age 30 when deciding I was ready to have kids. I think that’s one of the reasons endo isn’t investigated for many have pain only during their cycle so think it’s normal/are told it’s normal. Well wishes to you

[Hidden]

The Journal of Clinical Research in Paediatric Endocrinology has an excellent article by Nicole Todd and Aalia Sachendina called Dysmenorrhea, Endometriosis and Chronic Pelvic Pain in Adolescents which may be of use to you - you should be able to find it easily enough on-line and it isn't too technical. My daughter is slightly younger but suffers from exactly the same issues - she is using the pill continuously to try to avoid the worst symptoms and, with the help of some physiotherapy, is starting to manage quite well. Mefenamic Acid and regular painkillers were ineffective for her as well. She is being monitored by a gynaecologist, and all her scans (including an MRI) have come out normal, so it is looking more likely that she has severe Dysmenorrhea rather than Endo. That said, effective treatment for Dysmenorrhea seems to be as elusive as for Endo!