I’m wondering if there might be a forum on endo in the Momberries/TTC section, but as a 19-year-old with no children plans in the near future, I feel I don’t really fit in there!
Does anyone else have/might have endometriosis? There aren’t really any good forums around, and you Berries are all so lovely and supportive that I thought it might be worth a try to set up a bit of a forum here.
A little about me:
My first period was at age 16, nearly 17 (quite late). From my very first period, I had pain. I started getting my period every two weeks (SO. ANNOYING.) and near-constant pain. At 17 I was put on the pill, more to control my periods/pain than for contraception. I took them continuously, so having a period every 3 months. They were still revoltingly painful, and I was still having pain in-between. Eventually I had a laparoscopy and a [name_f]Mirena[/name_f] inserted while I was under GA (general anaesthetic) as I am a virgin with no children and it’s really recommended for mothers! The laparoscopy found just a little bit of endometriosis, that’s it. While relieved, it didn’t really answer much: until I was told that endo is very random; and people can have heaps of endo but only minimal pain, or heaps of pain and only minimal endo. The [name_f]Mirena[/name_f] didn’t work out: I was getting cramps so bad I was bed-ridden. It was removed (OMG SO PAINFUL - I didn’t get any anaesthetic at all 
) and I got the Implanon (arm implant) inserted. With that, I bled straight for three weeks, so I was put back on the Pill as well as the Implanon. And here I am now!
One of the worst things about endo at the moment is that I’m at the end of semester exam block. [name_m]Constant[/name_m] crippling pain really can be very distracting…
No-one else? 
[name_m]Hi[/name_m] jem :). I don’t think I have endometriosis but I also got my period quite late (I was almost 16 so it was in [name_u]June[/name_u]-[name_u]August[/name_u] of this year somewhere in there.) and had some slight complications with it. I get very irregular schedules (haven’t had another since [name_f]July[/name_f]).
I don’t have endometriosis, but I felt bad that you didn’t get any replies so I just had to respond. I’m always here to talk if you need to :).
I don’t have any medical advice or anything, but just wanted to say I totally feel for you. I’ve always had irregular periods too, maybe 4 or 5 times a year, and I have no idea when they’re going to come so it always stains my clothes. Maybe you could take painkillers if it really hurts- though you might want to check with a doctor if that’s okay. hugs
I have endometiosis. I have worried a lot about if I would be able to have children. I am 20 and not thinking of having babies any time soon, but it still worries me. I want to be a mom one day, so I know how you feel. It is painful. I got my period when I was 11 and it was miserable. In 2011, I finally got put on birth control because they suspected that I had it. In [name_u]August[/name_u] of this year, I was diagnosed with it. Good luck to you!
[name_m]Just[/name_m] a quick question - do any of you know how common endometriosis is? [name_m]Just[/name_m] curious, I know I could Google it, but you Berries seem much more reliable
@[name_f]Catalina[/name_f] - aww, thank you! I think it’s partly a running thing - you have to have a certain amount of body fat before your body can menstruate and we were probably running around too much! I think endometriosis is actually fairly common (I think around 30% of reproductive-aged females) but symptoms can vary quite wildly it seems!
@bonfireazalea - thanks so much! Periods are such a pain 
(both metaphorically and literally!) Funnily enough, my twin sister has the same problem as you (almost the opposite to me!) and she never gets much warning
@awsmith - me too! I’m only 19, so it will be quite a while yet, but I do worry about my future fertility. I’ve always wanted children so it’s a bit of a worry for me. I suppose only time will tell!
There are a couple of women on the Momberries thread who have experienced this issue and could probably give you some good advice, even if you’re not planning on having a baby any time soon.
I’m going to move your question there if you don’t mind
I’m not sure if it’s helpful but I will share my story
I have endometriosis and PCOS. I got my first period at 12 and right from the start the pain was so intense I couldn’t function and the bleeding was so heavy I couldn’t go to school. I was 15 when they finally diognosed the endo and put me on the pill, which like for you did not help, and infact my periods were more painful.
Fast forward to after I was married, my periods were still heavy, painful to the point I couldn’t function and very irratic. I was so releived to be period free once I fell pregnant with my eldest, I had her via emergancy c-section so they cleaned up the endo at the same time and apparently there was quite a lot there. Between having her and falling pregnant again I didn’t have a period. Again they cleaned any endo out during my c-section.
I got my period back 5 weeks after she was born and it was excruciatingly painful, I ended up in hospital because it was so bad. [name_f]Every[/name_f] period after that wasn’t anywhere near as painful or heavy as before having kids but were still very irratic. I had a [name_f]Marina[/name_f] put in and bled and cramped for 18week. I had it taken out and my period was again irratic but not as painful or heavy as before. Shortly after that I fell pregnant and lost the baby. 2 months later is when I was diognosed with PCOS.
Fast forward to [name_u]March[/name_u] this year, I fell pregnant again and so far although it has been a complication filled pregnancy, baby is healthy. Less than 4 weeks to go now!
Very rarely endometriosis can cause infertility. There are things they can do though, to help your fertility if endo does cause problems when you are TTC.
I have endometriosis. I was diagnosed when I was 12. I’ve been miserable and nauseated 12+ times a year for the past decade. I have tried a couple forms of BC, none helped, at all. I have a prescription for hydromorphone, and it works about 50% of the time (half the time, it just makes me more dizzy and nauseated and only reduces the pain slightly). I also have ovarian cysts on both my ovaries (I’ve been getting those regularly since I was 16). I am nervous about not being able to have children, but my hubs is convinced we won’t have a problem, and for now (since we aren’t trying), it’s comforting that he is confident, even though he doesn’t really understand the concept of endometriosis and cysts 
Anyway, you’re not alone! Does anyone in your family have it? My aunt and great grandma did.
@sarahmezz - thank you! Very helpful
@jazz1509 - I’m so glad you’ve had two and a half successful pregnancies! [name_m]How[/name_m] exciting; your little one is due so soon! I’m really glad to hear that endo doesn’t cause infertility too often - I’ve always wanted a big family. [name_f]Hope[/name_f] you start feeling better soon! It’s funny, most people I talk to who have tried the [name_f]Mirena[/name_f] (which admittedly isn’t a huge number) have had issues and had to have it removed. Hmm.
@katemp91 - I’m sorry for what you’re going through! I’m not actually sure if there’s a family history - all I know is that my mum had very painful periods (but unlike for me, the bc pill was fantastic for her), and I think my aunt on my dad’s side did too. I don’t think they’ve ever been diagnosed though. Interesting! My sister and cousins get fairly bad period pain; but really nothing like what I go through. There does seem to be a family connection!
[name_m]Hi[/name_m]. [name_m]How[/name_m] is implanon plus pill work out for you? That could help so maybe worth sticking with it for a bit. Mefanemic acid would help with the cramps and transexamic acid would reduce any heavy bleeding. You may benefit from a repeat laparoscopy as well so they can directly treated the affected areas. It’s an invasive thing to have done but maybe worth it. Did you get any relief after your laparoscopy before?
Endo mama (to be) here! I don’t want to rehash my whole endo drama, so I will try to summarize. We tried to get pregnant for 2 years with no luck. My periods got heavier and more painful after I got off the pill several years ago, to the point of sending me to the ER thinking my appendix had burst. I met with 4 different OB/GYNs before one finally took me seriously. I was told it was cysts, just normal menstrual pain, and even that it just “couldn’t be that bad.” All the while, I was missing work, trying to function being in 24 hour pain for 3-4 days in a row during my period. Absolutely awful experience. When I finally found a doctor who listened to me, I had a lap. She found endo and adenomyosis, as well as my left ovary wound around and adhered to my hip wall. She was (miraculously) able to get it unstuck and 95% of the endo removed. Fast forward 5 weeks after surgery, and I got my FIRST POSITIVE PREGNANCY TEST! I am currently 23 weeks along with our miracle son, to be named [name_m]Raphael[/name_m], which means “God has healed.” My prognosis for future children is good.
Endometriosis is a nasty, horrible disease. The physical and emotional effects it has on women are terrible. Best of luck to you on your endo journey. It can be long and hard, but many women do find hope and healing along the way. My best advice is to be an aggressive advocate for your own health and treatment. If you encounter physicians who don’t help you, fire them and find one who will! If I hadn’t been so aggressive with my own situation, there is little doubt I would still be miserable, under the impression I was suffering from ovarian cysts, and not pregnant.
Good luck!
Pretty sure I have endo too, so I feel your pain. I got my first period at 11 (poor little early bloomer me) and I was in absolutely horrid pain every time I got it; I’d get sick to my stomach and black out and my mom would have to come get me every day from school, till it got to where I’d miss a week of school every month. FINALLY, after 6 years of this, my mom agreed to let me go on birth control -which my doctor has been telling her I need since my first period! Its still too early to see if anything has changed, but you’re not the only one! <3 hope it gets better for you, hun!
Thanks everyone! Implanon + pill has been okay - at least I’m not getting periods at the moment! It’s annoying because I still have daily pain a lot of people are not very understanding about that! The main thing about the laparoscopy was that I kind of got some closure - at least there was a reason I was in so much pain and it wasn’t ‘all in my head’! But I was in a LOT of pain afterwards because the [name_f]Mirena[/name_f] didn’t like me for some reason.
@tintri - CONGRATULATIONS! [name_m]How[/name_m] exciting! [name_m]Raphael[/name_m] [name_m]David[/name_m] is swoon-worthy - so handsome! What a gorgeous name. I do have a good GP - the great thing is, is my mum is actually a GP so she knows a lot of good doctors. Very helpful really!
@baileyann - thank you! [name_f]Hope[/name_f] it gets better for you too - the pill is a great start. It’s awesome that you can just skip three months without a period! It’s so annoying when people say ‘oh yeah, I get cramps too’ - when it’s absolutely nothing like what we go through!
[name_m]Hi[/name_m] [name_u]Jem[/name_u], I have had similar problems to you and recently had a laparoscopy which found nothing. I tried several different methods to alleviate the pain and the amount of bleeding before I underwent the laparoscopy as I am only 17 and they didn’t want to perform surgery on me until they were sure that nothing else would work. This has been going on for about 3 years now as I originally got my period when I was 10 though it didn’t worsen until I was about 13/14. While it’s relieving that no endo was found, there has been no improvement to the pain which leaves me bed-ridden or the amount of bleeding which leaves me not wanting to go out of the house. I’ll stop there as there’s a LOT I could say, just want you to know that I’m here to talk if you ever want to and I hope your condition picks up!
[name_m]Hi[/name_m] @fiametta! Laparoscopies are not fun hope you’re feeling better! What really killed me was my shoulders - for some reason the gas they pump inside you irritates your diaphragm and somehow that makes your shoulders hurt - how are you going?
I know what you mean - I have definitely been bed-ridden by period pain (I often get clots and heavy bleeding). I’ve had to come home from uni/stay at home and miss classes, which is really annoying. I’m so behind!
I’m feeling much better thank you [name_u]Jem[/name_u], all of the swelling has finally subsided as it has now been 3 and a half weeks since the op. The shoulder pain was sooo irritating! At the moment I’m okay, as far as things go, although my period is due in a couple of days on the same day I begin my VCE exams, so really not looking forward to that! Although I’m not a uni yet, I know what that’s like. I was constantly having days of school which led to be falling behind in class. I have a follow up appointment with my gyno in a couple of weeks, so I’m just waiting until then to find out what the next step is as I’ve currently been put back on the pill (this is now the 4th time), and so far there is no improvement.
Good to hear! [name_f]Hope[/name_f] the exams are ok. I start exams in just under a week, and I’m finding it hard to study with constant pain.
Maybe inquire about the Implanon next time you see your gyno? I have that now. I’m on the pill as well at the moment, as I was bleeding quite a lot; but it would be great if it was a long time solution. Good luck for your exams!
Hey [name_u]Jem[/name_u]! I had an U/S on my birthday earlier in the month and was told that I do have endo. It sucks.
I started my period 3 months before my 11th birthday (lucky me!). From the start they were painful. I would spend a full 7 days in my bed unable to function and would miss school for it. At 13 I was put on the pill. It cut my periods from 7 days to 2. They were still extremely painful but I got through it. By 15 they started getting heavier and heavier and longer and longer and they were unbearable. It took until last year for my Gyno to take me seriously.
During my U/S they also found my right ovary had very poor blood flow to it so they think if I have problems with fertility it will be because of that and not the endo since I only have a little of it.