If you have endometriosis

[Bernadine]

How do you treat it?  Do I really have to be on bcp forever?  Ugh.  I don't like being on it, and I went off again 2 months ago, but Jesus, the pain.  It's unbearable.

Also, can we talk about laparascopies?  How many have you had?  I've had two, while ttc.  Neither relieved my symptoms at all.  I'm wondering if my dr. will recommend another one when/if I ttc again.

[textbookcase]

I hate being on BCPs, so I'm not. I try to manage it with diet as much as possible, and it really does seem to help when I'm sticking to it but it's haaaaaaaard. I've had 2 laps.

[gmail]

Jul 2, 2013 10:24:43 GMT -5 Bernadine said:

How do you treat it?  Do I really have to be on bcp forever?  Ugh.  I don't like being on it, and I went off again 2 months ago, but Jesus, the pain.  It's unbearable.

Also, can we talk about laparascopies?  How many have you had?  I've had two, while ttc.  Neither relieved my symptoms at all.  I'm wondering if my dr. will recommend another one when/if I ttc again.

Stage 4 endo here

Didn't know I had it until I went to a doc for other pelvic issues, and he suggested that my long-term dealings with cramps, deep pelvic pain, and upset stomach during my cycle were all endo signs. I went with a lap in Sept 2008 and he removed Stage 4 cysts from my tubes, ute, bowel, bladder and cul-de-sac (kind of like a small pouch area). I wasn't ready to TTC then, so I did Lupron for 6 months. TERRIBLE AWFUL HATED IT.

Then we started TTC, and it took us a year+

During one of my routine u/s with DS, the tech pointed out that it looked like my ovaries were fused to the side of my uterus...so if we decide to TTC #2, it could be interesting.

I'm on Nuvaring and while my flow is lighter, I have one bad day of cramps and upset stomach. The deep pelvic pain hasn't ever really gone away, unfortunately. It happens during sex and pelvic exams. Good times!

[gmail]

Jul 2, 2013 10:34:56 GMT -5 textbookcase said:

I hate being on BCPs, so I'm not. I try to manage it with diet as much as possible, and it really does seem to help when I'm sticking to it but it's haaaaaaaard. I've had 2 laps.

Oh? Do tell!

[Bernadine]

Jul 2, 2013 10:34:56 GMT -5 textbookcase said:

I hate being on BCPs, so I'm not. I try to manage it with diet as much as possible, and it really does seem to help when I'm sticking to it but it's haaaaaaaard. I've had 2 laps.

What kind of diet do you follow?

[Bernadine]

I meant to say in my original post- I only have stage 1, but with severe symptoms. I've read you can have little endo but a lot of symptoms and vice versa.

[Bernadine]

My tubes aren't blocked. I've had spots on my uterus and ovary. I mainly have period-related pain in my lower back and legs. I also get nausea and diarrhea.

[textbookcase]

gmail @bernadine it sucks butthole.

Foods to avoid:
wheat
red meat
refined carbs (white flour)
refined white sugar/hfcs
caffeine
dairy (some people say yogurt is okay - I eat greek yogurt)
fried foods
saturated fats
soy
preservatives

Increase omega 3 fatty acids. Lots of fiber. Lots of leafy green veggies. Whole grains besides wheat. Brown rice. Legumes. Oatmeal.

I eat a shit ton of vegetables, basically. Lots of smoothies/juices. A typical day when I'm sticking to the diet looks like this:

Breakfast: fruit and oatmeal w/greek yogurt and peanut butter.
Snack: Nuts or fruits/veggies.
Lunch: Big salad with lots of veggies and beans, usually chickpeas.
Snack: Green smoothie
Dinner: Stuffed peppers with some kind of grain and veggies. Sometimes I'll do turkey or chicken, but try to keep it mostly veg.

[Bernadine]

It really makes a difference though?

[textbookcase]

It really helps, but it is really hard to stick to. Different people seem to need to cut out certain foods, while some people can handle them fine. There are a lot of message boards and websites with information, google "endometriosis diet" and you'll find more information. I also have the book "Recipes for the Endometriosis Diet" which is helpful.

[jayandemm]

I'm bfing right now, so I'm having a nice break of the endo pain/bcp, but when I wean, I'll be right back on bcp, unfortunately.

I've had one lap. halfway through TTC journey.

[thatgirl2478]

Wow - that diet cuts out all the best things in life .

My Dr suspects I've got endo, but I have none of the symptoms (or I do, but I don't identify the pain / bleeding as 'severe'). We've been TTC #2 for about a year and a half. In 2 weeks I go to back to the Dr to discuss our next steps.

[mushmouse]

I had one lap. I had a couple of miscarriages and the specialist thought it might be endo. I did have terrible pain during periods but just lived with it. I haven't had the terrible pain or nausea though since having my son. The bleeding is much heavier but largely pain/bloat free. When I was working out a lot I followed a similar diet to the one above and I had absolutely no period symptoms while eating that. Even just cutting bread and coffee provided relief.

Did anyone else have a nightmare period right after the lap? It was seriously the worst I've every felt.

[gmail]

Jul 2, 2013 13:53:46 GMT -5 mushmouse said:

I had one lap. I had a couple of miscarriages and the specialist thought it might be endo. I did have terrible pain during periods but just lived with it. I haven't had the terrible pain or nausea though since having my son. The bleeding is much heavier but largely pain/bloat free. When I was working out a lot I followed a similar diet to the one above and I had absolutely no period symptoms while eating that. Even just cutting bread and coffee provided relief.

Did anyone else have a nightmare period right after the lap? It was seriously the worst I've every felt.

ooooooh yeah! I forgot about that. Yup, it suuuuuuucked.

Also, my doctor was all "we removed chocolate cysts from you..." which makes it sound all awesome. But they aren't. Please don't defame chocolate that way, Doc.

[gmail]

Jul 2, 2013 13:53:46 GMT -5 mushmouse said:

I had one lap. I had a couple of miscarriages and the specialist thought it might be endo. I did have terrible pain during periods but just lived with it. I haven't had the terrible pain or nausea though since having my son. The bleeding is much heavier but largely pain/bloat free. When I was working out a lot I followed a similar diet to the one above and I had absolutely no period symptoms while eating that. Even just cutting bread and coffee provided relief.

Did anyone else have a nightmare period right after the lap? It was seriously the worst I've every felt.

Cutting out dairy and coffee during my period cuts back on cramping SIGNIFICANTLY for me. But it's a toss-up b/c I desperately need the caffeine, too.

[mushmouse]

Jul 2, 2013 13:57:21 GMT -5 gmail said:

Jul 2, 2013 13:53:46 GMT -5 mushmouse said:

I had one lap. I had a couple of miscarriages and the specialist thought it might be endo. I did have terrible pain during periods but just lived with it. I haven't had the terrible pain or nausea though since having my son. The bleeding is much heavier but largely pain/bloat free. When I was working out a lot I followed a similar diet to the one above and I had absolutely no period symptoms while eating that. Even just cutting bread and coffee provided relief.

Did anyone else have a nightmare period right after the lap? It was seriously the worst I've every felt.

ooooooh yeah! I forgot about that. Yup, it suuuuuuucked.

Also, my doctor was all "we removed chocolate cysts from you..." which makes it sound all awesome. But they aren't. Please don't defame chocolate that way, Doc.

That's no way to describe a cyst!  Mine said you can start TTC right away.  The anesthesia made me feel like I got him by a truck for days.  Then I immediately got my period and thought I was dying.  I seriously thought my head would explode.  He should have mentioned THAT!

[gmail]

I was on TB/TN during that time, and the IF ladies were really helpful in prepping me for the post-op of a lap. They warned me that my shoulders would hurt, and at the time, I was like "whaaaa???" but they did!

We are still on the fence about TTC again, but if we do, we'll try on our own and then skip straight over to the fertility clinic. I don't want another lap. A family friend is an RE out in CT, and he told me that he is cautious about too many laps for endo.

[gmail]

Jul 2, 2013 14:03:13 GMT -5 lilmissladybug said:

Jul 2, 2013 10:24:43 GMT -5 Bernadine said:

How do you treat it?  Do I really have to be on bcp forever?  Ugh.  I don't like being on it, and I went off again 2 months ago, but Jesus, the pain.  It's unbearable.

Also, can we talk about laparascopies?  How many have you had?  I've had two, while ttc.  Neither relieved my symptoms at all.  I'm wondering if my dr. will recommend another one when/if I ttc again.

I had a lap January 2005, found out I was pregnant at my 2wk check up. Then BCP after DD. When DS was 6mos old I got Mirena. I had Mirena for 3yrs and loved it. It didn't help my endo but that's because it ended up imbedded. My last round of BCP didn't do anything, instead I bled like I was being stabbed to death for two weeks straight. So in January I had an ablation, I'm obviously done having kids, but this is suppose to help. Unfortunately, it was unsuccessful which means I will be getting a hysterectomy soon. 

I considered trying Lupron Depot, but you obviously can't TTC during that time. 

It's the debil

[peachykate]

1 lap. I have a mirena IUD but its not cutting it for the pain so they added a new bcp. If it helps I'll get the IUD out next month and if not I've been given the option of doing Lupron. I'd rather have another lap than go on loopy lupron and if it gets me through six more years ill just get it all taken out at that point. I haven't gotten my dr on board yet with my plan.

Sorry you are in pain!

[juliagoulia]

I do. I use Mirena because it is the only hormonal BC I can use (other hormonal bc makes me go BSC- but this doesn't bother me since it doesn't go throughout your system). I love it. I don't get a period- though I still do get some pain during the time I would get it. But instead of 10 days of severe pain and very heavy bleeding, it's 2 days of moderate pain that can be controlled with a heating pad and NSAID's, so it's a huge difference.

I have had 2 laps done, one about 5 years ago and another about 2 years ago (they also removed cysts with that one). The first lap didn't make much of a difference though they did get rid of some adhesions.

Endo blows.

[berbles]

Yup.  And I had one of those chocolate cysts.  It was the size of a goddamned grapefruit.  The surgery to remove it is what diagnosed the stage 4 endo last August.

I'm fairly sure that the reason my endo got as bad as it did was because I had the Paraguard IUD for 5 years.  A lot of the side-effects of the IUD are similar to endo symptoms.  So I ignored the heavy bleeding, terrible cramps, etc. for a lot longer than I otherwise would have.  

I'm back on BCP (Lo Loestrin) for the first time in yeeeeears.  I'm kind of meh about it so far.  


Silver lining story:
I thank the universe every day for my endo.  Firstly, because THANK GOD I never got pregnant.  Stbx and I were TTC for several months before the diagnosis.  Secondly, it showed me my H's true colors.  After my first surgery he lost his everloving mind.  The stress of my health and needing him to step up and be a better partner just pushed him over the edge.  He couldn't handle it.  So thank god for THIS being the stress-trigger that made him realize he wasn't willing to work on our marriage.  THANK GOD it wasn't, ya know, after we had our first kid...

[thatgirl2478]

UGH - Do NOT google 'Chocolate Cyst' if you can help it.

And whyyyyyy did google images have to put a chocolate volcano cake in there ...?!  I feel nauseous now.

[Yankees21]

How did you guys get diagnosed? I've always had terrible cramps (went on BC for them at 15) but don't think I have other symptoms. We are TTC so this thread made me nervous!

[Bernadine]

I'm also glad I didn't get pg with xh, but now I'm thinking I might want to get pg with J. And he has low testosterone. Should be lots of fun trying to get knocked up, lol.

[gmail]

Jul 2, 2013 14:35:15 GMT -5 Yankees21 said:

How did you guys get diagnosed? I've always had terrible cramps (went on BC for them at 15) but don't think I have other symptoms. We are TTC so this thread made me nervous!

I was officially dx'dafter the lap. Before then, it was only suspected endo.

In full disclosure, I had a whole shit-ton of other pelvic issues that brought me to the specialist, one of them being deep pelvic pain during sex.

[thatgirl2478]

Jul 2, 2013 14:43:21 GMT -5 mofongo said:

Jul 2, 2013 12:17:28 GMT -5 thatgirl2478 said:

Wow - that diet cuts out all the best things in life .

My Dr suspects I've got endo, but I have none of the symptoms (or I do, but I don't identify the pain / bleeding as 'severe'). We've been TTC #2 for about a year and a half. In 2 weeks I go to back to the Dr to discuss our next steps.

You don't have to have symptoms to have endo.

yeah, that's what I've been reading.  :/

[Bernadine]

Jul 2, 2013 14:35:15 GMT -5 Yankees21 said:

How did you guys get diagnosed? I've always had terrible cramps (went on BC for them at 15) but don't think I have other symptoms. We are TTC so this thread made me nervous!

The only way to get an official diagnosis is with a lap.  I had my lap after xh and I had tttc.

[thatgirl2478]

Jul 2, 2013 14:35:15 GMT -5 Yankees21 said:

How did you guys get diagnosed? I've always had terrible cramps (went on BC for them at 15) but don't think I have other symptoms. We are TTC so this thread made me nervous!

Don't get too nervous!!  I was able to conceive #1 naturally after only 6 or so cycles (some were looong cycles).  It can happen.

ETA - I don't have a diagnosis - just a suspected case of endo.

[Yankees21]

Jul 2, 2013 14:46:32 GMT -5 gmail said:

Jul 2, 2013 14:35:15 GMT -5 Yankees21 said:

How did you guys get diagnosed? I've always had terrible cramps (went on BC for them at 15) but don't think I have other symptoms. We are TTC so this thread made me nervous!

I was officially dx'dafter the lap. Before then, it was only suspected endo.

In full disclosure, I had a whole shit-ton of other pelvic issues that brought me to the specialist, one of them being deep pelvic pain during sex.

Thanks for the info! That sounds horrible.

[gmail]

Jul 2, 2013 14:49:36 GMT -5 Yankees21 said:

Jul 2, 2013 14:46:32 GMT -5 gmail said:

I was officially dx'dafter the lap. Before then, it was only suspected endo.

In full disclosure, I had a whole shit-ton of other pelvic issues that brought me to the specialist, one of them being deep pelvic pain during sex.

Thanks for the info! That sounds horrible.

It was pretty fucking awful.

It involved needles, physical therapy and lots of pain. DId you know they have physical therapy for pelvic floor muscles?? Fascinating.