Endometriosis--please help me.

[sleepinbeauty]

My midwife told me a few months ago that my chances of having endo are very against me. It runs in my family. We then determined that I *do* have it. It broke my heart. I knew what that meant: my biological clock wasn't just ticking, the hands of it were moving so fast around that I couldn't even see them.

Now, I've been on the pill for about a half a year to battle it. My OH has been extremely supportive and I love him more than anything in the world. We had done some talking and we have a loose idea of what we're going to do: move into the apartment this summer, get married about a year later, TTC....

Recently, I have been in pain constantly. It feels like menstrual cramps, but all cycle long, at any time during the day. My fertility is in danger. Every second I wait, my uterus is becoming more and more like Swiss cheese and my chances of ever having a baby is dropping like a brick. I'm completely devastated. I never knew what true devastation felt like--it sucks. It hurts even more when [TMI] I go #2 or masturbate or have sex. Last night, I was moaning in pain when i went to the bathroom, like I used to when I had my period before I went on the pill.[/TMI]

I am 19, my OH is 18. We're young, we have our whole lives ahead of us, I understand that. OH wants to wait as long as possible (he was aiming for early 30's *rolls eyes*) but I have run out of time, it seems. All I've ever wanted was to be a mom. My life has been revolving around it since I was 16 years old--I always knew something was wrong and I've been trying to do what I can since then.

I'm bringing it up tonight with OH. I'm hurt and I'm lost and I need help here. If YOU were in this situation, how would you address it? I know that you and I are different people, but I'd really appreciate hearing what you'd do. I'm desperate.

 

[Nyx]

Hi there, didn't want to read and run. I'm afraid I don't really know much about the condition.
Have you had a good talk with a doctor/ specialist? I would want to get all the facts about it before I decided anything. Like what they would suggest about conceiving in the future. Maybe you can find people that have endometriosis too and see what their experiences and thoughts are?
I'm sorry you're in a lot of pain with it and that you're obviously worried about it.
I hope your talk with your OH goes well, he just needs to understand what consequences the condition can have and how you feel about it. Then you can figure out some kind of plan. I know 19 is perhaps seen as too young and you've got lots of thing you want to do in the future, but you need to think properly what you want in life and 19 is a perfectly reasonable age to have a baby as long as you're in the right circumstances. x

 

[jen1604]

Im sorry to hear youre in so much pain darling
If I was you I would want to really look into everything,you know facts and figures and percentages,all that stuff about conceiving with endemetriosis.Sit down with your other half and go over them all,until you know as much as you can.And then make your decision.
Also,why dont you post this in the your health and wellbeing section too so that more girls will see it,some of them might have been in this situation xxxxxxxxxxx

 

[jen1604]

I just completely by chance found this about a girl with endometriosis https://www.momaroo.com/momaroo/693790891/i-want-to-have-another-baby-and-become-a-homemaker-again/
xxx

 

[toffee87]

hey!

My mum had endo and it is my fear too. However, I've learnt that you can have the worst pain and it can be very mild endo. So it doesn't mean you're infertile!

My friend has endo and pcos and she had acupuncture, she said her pains decreased dramatically and so did her cysts (even her surgeon told her to continue with acu).

 

[eclipse]

Ok, story time, sorry, I'm jacked up on caffeine and no sleep. My mom had horrible pains for most of her teenage years. Back then they didn't believe her and even sent her to a shrink. when they finally consented to do an exploratory surgery, they discovered that at 17 she had endometriosis so severe that it had already destroyed one ovary and was outside around her colon, stomach, etc. So they cleaned it out. I won't lie to you, she had multiple miscarriages, but she also had two children. And I work in healthcare and I can safely say that they have come a long way with the treatments. Some of the most effective I've personally seen with my close friend is a procedure that essentially "scrapes" all the endometrial tissue out and cleans up the uterus right before she ttc. It has worked twice for her and she has SEVERE endometriosis. Please don't lose hope. It is a brutal painful affliction, but there are options. Maybe it is time to look into other options besides the pill, and get a COMPLETE list of all your options and alternatives. I wish you the best of luck and if you followed anything I just said, bless you XD

 

[lolalee]

I'm new, so I can't post links - I'll see what I can do, they're very important to this whole thing.


Please don't freak out. Pain is terrible, but you have a lot of misinformation.

1) Your uterus is not becoming like Swiss cheese. Endo is outside the uterus (adeno is in the walls, that's another story, but not so likely in your age group).

2) Chances are you have endo, but only a lap (surgery) can determine that. Not a midwife, although she can help you.

3) You need to do some real research about excision surgery. That can help women get pregnant. it removes the endo without harming other organs. But you need to go to an endo expert, not a midwife or an ob/gyn.


4) You need real pain killers. I needed narcotics for the worst days. Other days I can alternate advil and tylenol (ask phamacist about this).

5) You might get some real help with progesterone. this was just on oprah

Google Bellevue Phamacies or others like Womens International Hormone

there's help out there!

progesterone can help with endo pain (low progesterone can contribute to endo and other problems) - getting your hormones tested is good (at the right days)

6) Look up naprotechnology

this doctors works with endo and natural hormones. Dr Hilgers in nebraska

Learn charting. This will help you know when to test and when to use natural hormones.

Please don't freak out. It really is needless,, you just need to see the right docs and experts and not get thrown around by the medical system.

An endo diet can help women, but only surgery removes the endo.

Many women with endo have children. You do not want to wait, but your uterus is certainly NOT becoming swiss cheese.

You also might want to search for the IC diet. Some women have interstitial cystitis, the 'evil twin of endo' - it affects the bladder. Doing the IC diet helps me with pain.

Good luck!

 

[lolalee]

If you're in pain, why are you doing sexual things? Not trying to pick on you, but you're going to have pain every time! Why not get this taken care of?

Look into sending your records for a free records review at the center for endo care in atlanta. i'd like to try to post the link, but don't know if it will let me - very frustrating!

google it though or check center for endo. no spaces followed by the letters for the comsites

if you have pain during sexual things, you may have endo in the cul-de-sac / pouch of douglas. this includes the rectal pain when going to the bathroom

you will always have pain until the endo is gone

now, for the constipation, that can be helped. use magnesium! flax seeds (but be careful), aloe vera, veggie greens in a bottle supplement or liquid. use fiber. drink water and eat veggies and fruits. don't let yourself get constipated. the pain WILL be bad.

acupuncture can help...but really, only excision surgery removes the source....the CEC is filled with wonderful people, top top top docs..

some foods can make things worse - caffeine, dairy, chocolate...i've cut out most red meat and dairy (i'll pass the site on soon about that, it does help), but then you need B vitamins....evening primrose oil helps me, vitamin e helps, fish oil...

i've had endo surgery, which has helped a LOT, but they believe i also have adeno...that's endo in the uterine wall...it's not common when you're young...i wish i had gone to experts like these when i was your age...there IS help out there! but don't be swayed in the wrong way....

this is actually endometriosis awareness month

 

[lolalee]

i hope this lets me reply again! i've been thinking about your post...please be sure to get help from an endo expert! talk to a few if you can....the problem some women make is having a first or second or whatever surgery with the wrong doctor and then they continue to run around looking for help

how much i would have loved to go to the right doc the first time when i was in high school! they didn't have good pain killers then and the pain made me want to die

thankfully, i 'only' had pain during my period...your monthlong problems might be traced back to the pill....the pill can help or cause problems, but an endo expert knows the endo needs to be removed..

this is what i was thinking about...your profile says you're in ny? there are a few doctors in ny who say they are experts...you might look into dr seckin (tamer is his first name i think), or dr iris orbuch...she's the one who told me about the cul-de-sac pain (well, i knew about it, but she drew the diagram!)...you can search for them, they do not have sites...there are lots of stories about docs on the erc site (endometriosis research center).....there's a dr kanayama who says he helps women, but i would not recommend him...he has his own site, but i don't think he's as knowledgeable or helpful as the CEC for example

your life will change if you find the right doctor...and they are out there, and women will give you names and info! but find someone who does not deliver babies, but does remove endo as his or her primary job

 

[katwoman28]

I'm sorry to hear how upset you are.
I hope that things go well for you.

 

[toffee87]

Natural progesterone cream is worth looking into! x

 

[Mum2bewaiting]

I was gonna say also, it may help hearing it, that my best friend had endo, but fell pregnant really quickly with both her children without really trying, hang in there and as others have said, get advice from the specialists, are u at a GP practice where there is one doctor with more gynae knowledge than the others for instance?

Good luck

 

[toffee87]

Oh yes. I forgot to add that my friend who has PCOS and endo fell pregnant first month trying! she surprised her self!!

 

[sleepinbeauty]

Thank you everyone. OH and I had a talk last night. He's decided that he doesn't want any but that we could try if I wanted to...but that he can't guarantee that he'd be happy. I think he would really take to it but I love him too much to put him through that. It looks like I'm never going to have kids. I cried all night from 7 until I fell asleep around midnight, woke up at 6:30 and started crying again and I'm still going. i can''t even explain what I feel like right now. But I'm not leaving him. and I hurt really bad today on top of it. I hate this. it's so unfair. Why is it that the people who want it most cannot have it? I'd kill a person to just have one. All I want is to ave this little person to help grow and learn, and I can't. Even if my body does let me, my OH doens't want to. I'm so lost. My entire life has been revolving around having my own little family someday and I can't.

 

[toffee87]

Stop that right there. Just cause your OH doesn't want one now, that doesn't mean never. It may be 2 years away! And although endo can cause problems, it doesn't make it impossible! There are plenty of methods out there to control it. You're mourning for something that hasn't happened, and it's highly likely you will have a baby.

 

[sleepinbeauty]

No, he said he doesn't want one and that he doesn't really see that changing and that he's sorry..... I give up. Not to sound dramatic, but it just hurts too much to keep fighting. (emotionally, I mean)

 

[Mum2bewaiting]

I hate to say this but surely ur compromising ur own happiness in the future, and u are young. as the endo is obviously causing u so much discomfort u need it sorting, if u have a family or not in the future. U r still young so things change.....

 

[sleepinbeauty]

yeah. i mean, we said we'd talk about it in a week....but I don't think either of us will change. You guys know how in love I am with the idea of motherhood, but he doesn't want it and I'm one of those "hooray for freewill!" people....I asked if we can NTNP for a year and see and he said, "if you really want to, we can. I always want you to ahve that option...but I don't think I'd be happy." *wilt*

 

[toffee87]

You definitely need to consider leaving him. I mean, for now you may be able to cope with it, but in ten years...i don't know. Of course he's offered you the chance of being a mum, but he says he won't be happy about it, that's not nice on you.

 

[sleepinbeauty]

We'll see. no one has ever "got" me like he does. No matter what is going on, he can make me smile (even last night/this morning). He is the sweetest, most loving person I've ever met. I can't leave him. I see what you're saying though...and it does worry me. Maybe he will change his mind....he did say that he didn't KNOW if he could be happy...maybe he'll love it. He said that too--there's no way he couldn't love me and our baby......but I also know that he could end out resenting the baby or me. i'm very stuck. I'd rather keep him though. T^T