Finally Getting Answers! (With more quest... - Endometriosis UK

Endometriosis UK

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Finally Getting Answers! (With more questions than before..)

Iamnare profile image
11 Replies

Hi everyone! This is my first post on this website! My name is Nare (Na-reh), I am 25 years old. I had my first period when I was 13 and have had pain ever since. For a long time I tried dealing with the pain naturally and with homeopathic stuff, but my body was basically like "yeah, that ain't gonna work." The 200mg of ibuprofen that worked for 14 year old me turned into 400mg, occasionally 600mg then just stopped working altogether. I'd take 400mg, use tons of homeopathic stuff, hot water bottle, laying in bed, no help whatsoever. Eventually the medicine would kick in but only for a short time.

Last February I went to my diet gyno appointment and she pretty much said "that's normal, some women just experience it, you have dysmenorrhea, take the pill or pain killers." I didn't want the pill so I was prescribed Naproxen. For the last year I've been taking Naproxen and it has been wonderful, but unfortunately. Not enough. I start having pain about 5 days before my period ever starts So I take the Naproxen 500mg twice a day at the first sign of pain. If I don't do this and instead wait to start my period, it's pretty much useless. Sometimes the cramps I get before starting my period are as bad as my menstrual cramps. The Naproxen however isn't enough either and I still find myself taking that twice a day PLUS extra strength Tylenol to take away that pain that is still enough to interrupt my day.

I have often missed school, work, events as a result of my lovely cramps. Throwing up, rocking back and forth, nausea are not uncommon. Last January was probably the worst it has been. I started menstruating but the pain wasn't horrible so I decided I wouldn't take painkillers and would use my homeopathic stuff. Wrong move. Soon after I was feeling horrible. Cramps continuing to get worse. I couldn't move. My dad was upstairs and I called him on the phone to come help me because I was so bad I couldn't tell for him up the stairs. Prior to this is always sort of hide my pain from him, or rather is deal with it because I assumed it was normal. I also called my mom and boyfriend from their work and school and had them come to me because I just didn't know what to do. I had my dad bring me painkillers, a bucket of hot water to put my feet in (which helps), a heating pad, and magnesium which all help. The pain got worse, I threw up several times and was on the verge of passing out. I thought I'd wake up in the hospital.m, but my dad gave me some water with honey which kept me going a bit. I was sweating and hot but also freezing, I was crying, throwing up, UGHHH it hurts to think about lol. My mom eventually helped and although it took a LONG while, I was better. This happened a month before that first gyno appointment.

Fast forward to today. I just got back from a general exam with a different Doctor who didn't just tell me off. I expressed my concerns with him and told him that is been researching a lot and that I have many symptoms of endo. He listened to my symptoms and agreed that they didn't sound normal. We did a vaginal ultrasound which showed that everything was fine. My ovaries are healthy, my uterus is in the prefereed position and all that jazz. However he told me (and this I knew already) that most women with endo don't have anything show up on ultrasounds. He told me (this I knew as well) that the only way to know for sure is to do a laparoscopy. He also told me that his recommended treatment would be for me to take birth control. I've never taken this or been a fan prior to today. I expressed that I was concerned about its affects on my fertility and he said that if anything it's good because it preserves my fertility. He also said (because I asked) that if I want to get pregnant, I can do so pretty much immediately after getting OFF the BC.

Basically, he didn't diagnose me with endo because we didn't do a laparoscopy, however here are my options:

Either take the BC pill (which helps both endo and primary dysmenorrhea if I happen to have just that and not endo) or I do a laparoscopy to be sure.

I am leaning towards the laparoscopy first becahse quite frankly, I want that certainty of knowing. Also if I have it, they'd remove it right there during the laparoscopy.

Maybe this is weird, but I HOPE I have endo because I just don't want this ridiculous pain I experience to be a result of nothing (or something science doesn't yet know).

What are your thoughts on doing the laparoscopy vs. going on BC right away? He gave me time to think about it and get back to him.

Sorry to be so long ladies! I look forward to hearing some opinions <3

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Iamnare
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11 Replies
sabbs profile image
sabbs

I would give the birth control a go at least until a lap is booked in as the waiting list is 4 to 6 months or at least it is here. And it can help with the pain and bleeding my be stops me from bleeding completely doesn't always help the pain. I had my lap yesterday and couldn't remove all of it and have to see a specialist in a few months.

Iamnare profile image
Iamnare in reply tosabbs

For me the bleeding isn't as bad as the pain is. Hopefully if I choose birth control then it helps with the pain. That's the idea.

I have to call the doctor back and see when I could schedule the lap for. I want it mostly for piece of mind. I'm sure you all understand.

sabbs profile image
sabbs in reply toIamnare

Yeah definitely

JeanOsborne profile image
JeanOsborne

Hi I would advise you have the laparoscopy to find out if you have endo. But please be aware that if you do and it is severe you would then be better to look on the BSGE website and find a specialist near you then go back to th GP and get a referral to them. If your endo is severe it should only be treated by a specialist as a general gynaecologist will likely miss some. Trying the be in the meantime may help with the symptoms. Good luck.

Iamnare profile image
Iamnare in reply toJeanOsborne

I definitely will! I checked beforehand to make sure that the gyno I chose (who I saw yesterday) was familiar with endo. They have specialists here so I will definitely remember that! Thanks for the good advice. Yesterday at my appointment, he did a vaginal ultrasound and fortunately my ovaries are very healthy as is my cervix/uterus. This is all good to know, but I also understand that the endo could be elsewhere and that ultrasound is not a tool for diagnosing. Still it was good to see my ovaries are healthy.

How do you feel about BC?

JeanOsborne profile image
JeanOsborne in reply toIamnare

Hi just be aware that endo very rarely shows up on ultrasound unless it is very deep.ive spent most of my life on some form of be. The only thing I've never tried was the coil.

Lizziemay160 profile image
Lizziemay160

Sorry to hear your terrible symptoms! I also have suspected endo. I've been on the pill (cerazette) for about 2/3 years now. It's worked really well for me, masking my pain mostly and I haven't really had a period since I started - though this is different for everyone. It has let me live a normal life where I can almost forget I may have endo. However it has not been without its side effects. I generally get nausea leading about two to three times a month for a few days, which I suspect are the ones leading up to my 'period'. But recently it's got far worse, where I am nauseous pretty much everyday. I've decided to finally be referred for a laparoscopy and face my fears. I don't want to ignore my symptoms anymore, the fact that I'm so reliant on this pill scares me in case I miss one accidentally etc. Also, I do want to have children in the future (I am 20) and have heard from other people on here that the laparoscopy is the best way forward. I hope that helps you a bit, there's lots of fab advice on here. Good luck!

Iamnare profile image
Iamnare in reply toLizziemay160

I definitely agree with you. I want to have children as well in the next few years and don't want the possibility of endo to hinder that.

The doctor told me that BC would preserve my fertility however I need to do my own research on it before deciding. I called his assistant today and left him a message asking how long the wait time for the lap surgery is. So we'll see! I'm definitely leaning towards the surgery.

Iamnare profile image
Iamnare

Hi! I should have mentioned, I'm from California. I couldn't find a US message board so I have been following this one :)

I do have other symptoms as well. I do experience some pain with sex, not always but it's definitely there upon deeper penetration in certain positions. The doctor said yesterday that my ovaries are very close to the vaginal opening and that sometimes this causes women to experience pain with sex (just an observation, not to say it can't be from endo). I experience lower back pain regularly that is aggravated by sleeping positions and whatnot. It gets much worse during menstruation but I experience it often outside of mensturation. I experience pain in my thighs and butt as well but that's usually only on my period. I will randomly get pelvic pain as well which I always assumed was normal (I had nothing to compare it to). I experience constipation/diarrhea right before my period and during. I experience digestive issues throughout the month anyway (and bowel issues pretty regularly) but again I just assumed it was normal because I had nothing to compare it to. I occasionally get pelvic pain with urinating.

There may be more, I'm trying to piece it all together because I don't know what things relate to the endo or not. For instance, I thought the pain I had with sex was normal for everyone, the doctor told me I shouldn't experience any pain with sex. So now I know! Lol.

Thanks for your reply :)

And yes to the shooting pains! There's a consistent low grade intense dull pain and shooting pains as well.

Iamnare profile image
Iamnare

I requested to join the group! Thank you!

Iamnare profile image
Iamnare

I should also note that I have many gastro issues that I have also assumed are normal however the more I read about it the more it sounds like IBS which I know overlaps with endo.

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