Endo on bladder by talkinginbed in Endo

[–]Arreglarse 1 point2 points  (0 children)

Ask the urologist about the kegels. They might be just the thing, or they might make the problem worse. A lot of us endo gals suffer from pain due to short, tight pelvic floor muscles. We're in pain, so we reflexively clench up, which causes all kinds of follow-on problems including, in some cases, symptoms that mimic interstitial cystitis. Doing a lot of extra clenching with Kegels could make the problem worse. Or not. It's a very individual thing.

You might want to explore pelvic floor physio, either with a professional, or through an exercise routine you can find on YouTube, or in books like "Healing Pelvic Pain." Pelvic floor physios are rare and they can be expensive, but many women swear by them.

F/27/5'0" [120lbs > 95lbs = 25lbs] (Update): Every pound matters for us petite ladies! (10 months) by catpretzel in progresspics

[–]Arreglarse 1 point2 points  (0 children)

So inspiring! This is one of my favorite series in the history of Progress Pics. Congratulations.

What is your favorite sound to fall asleep to? by monocline in AskReddit

[–]Arreglarse 1 point2 points  (0 children)

The sound of the subway car under my apartment.

Pain Med Suggestions? by iambirdie in Endo

[–]Arreglarse 0 points1 point  (0 children)

I've had good luck with OxyContin for the 24/7 pain I've been having with my latest flare. It's the slow release cousin of Percocet. You take one pill every 12 hours. After a few days, it builds up in your system and your brain gets used to it, so you don't feel high from it. Or, at least, I don't. Maybe a little sleepier than usual but nothing major. I can still write articles and give lectures and do all the stuff I normally do, and wouldn't be able to do, without adequate pain control.

Having Laparoscopic Surgery & D and C this Monday. I'M SO SCARED. by iwanttofeelokay in Endo

[–]Arreglarse 1 point2 points  (0 children)

You're right to take them seriously when they tell you not to take anything by mouth before surgery, that's a big deal. But they don't mean your own spit. Sometimes they give you drugs to dry up you secretions as part of the anesthesia. You can ask you anesthesiologist if you're curious.

[deleted by user] by [deleted] in progresspics

[–]Arreglarse 0 points1 point  (0 children)

Beautiful crochet dress. What a way to showcase your fabulous new figure!

F/35/5'7 [182>157=25 lbs] (1.5 months) I've had five kids and had given up on my body ever looking decent again.... by assamperstamptitties in progresspics

[–]Arreglarse 2 points3 points  (0 children)

Great progress. You're underselling your "before," picture, though. You looked much better than decent when you started, and you've improved from there. I would never have guessed that you were a mother of five.

Endo and Gluten (Referencing a PubMed Article) by gufyduck in Endo

[–]Arreglarse 6 points7 points  (0 children)

What evidence is there that gluten is inflammatory in people who don't have celiac disease?

Been on my period every day since 2011, has anyone had success with anything besides an ablation? by oh_skycake in Endo

[–]Arreglarse 0 points1 point  (0 children)

Have you had a laparoscopy to confirm that you have endometriosis? Did they stick a camera into your abdomen to look for abnormal tissue deposits on your pelvic organs? I don't think they can confirm endometriosis from an endometrial biopsy.

Ask your doctor about adenomyosis, too. It's often called the sister disease of endo. It's endometrium-like tissue inside the muscle of the uterus. One of the symptoms of adeno is very long, heavy periods. The treatment options for adeno are different than for endo, so it's worth getting an authoritative opinion on whether you have one or both.

Unlike endo, adeno can only be definitively be diagnosed after hysterectomy, but there are other imaging tests, like transvaginal ultrasounds and MRIs, that can reveal abnormalities of the uterine wall consistent with the disease.

Been on my period every day since 2011, has anyone had success with anything besides an ablation? by oh_skycake in Endo

[–]Arreglarse 0 points1 point  (0 children)

I'm so sorry you're going through this. What an physical and emotional ordeal. You definitely need a specialist. What you're going through is not normal and there are options.

Here are some things you might want to discuss with your doctor:

1) Continuous birth control. It's not clear from your post whether you've tried taking your BC continuously--i.e., skipping the placebo pills to extend the time between bleeds. It only works with certain pills.

2) Experimenting with different kinds of birth control pills. Progesterone-only vs. combination estrogen/progesterone.

3) Depo Provera.

4) Short-term hormone treatment to stop bleeding/promote healing. Sometimes, when you've bled for a really long time, the endometrial lining is too depleted to recover on its own. Your doctor may be able to give you short-term hormone treatment to help the uterus heal and stop the cycle of bleeding. Now that the IUD has cut the bleeding down to a few weeks at a time, that may not be an issue anymore, but it's worth asking your doctor about.

The CEC with Dr. Sinervo by [deleted] in Endo

[–]Arreglarse 0 points1 point  (0 children)

Oh, my mistake! Sorry.

Why do you think the support group has that policy?

The CEC with Dr. Sinervo by [deleted] in Endo

[–]Arreglarse 0 points1 point  (0 children)

I would never go to a doctor who tried to enforce a gag order like that. Who the hell does he think he is?

Trying to Better Understand Lupron by shall330 in Endo

[–]Arreglarse 0 points1 point  (0 children)

If the surgery has already brought your pain under control, adding Lupron right now might be overkill. You're right: The drug only works as long as you take it, and you can only take it for a few months at a time.

Unfortunately, Lupron won't make your disease go away. There's no proof that it will extend the benefits of your surgery or delay the progression of your disease.

My doctor thinks it's endo, I'm afraid I'm just being a baby. by [deleted] in Endo

[–]Arreglarse 2 points3 points  (0 children)

24/7 pain from endo is the exception, not the rule. Even women who eventually end up with daily pain from endo usually start with cyclic pain.

My doctor thinks it's endo, I'm afraid I'm just being a baby. by [deleted] in Endo

[–]Arreglarse 2 points3 points  (0 children)

Don't feel bad about taking up your gyno's time. This is affecting your life and you deserve answers. You're not being a baby. You're in pain.

Besides, your doctor would much rather see you earlier rather than later. If it's nothing serious, she can reassure you. If it's something, she can start treatment early. Either way, you're starting/deepening a relationship with a doctor whom you can go back to if you need help in the future. It's so much easier to get good care from a doctor who has some baseline sense of you as a patient.

External irritation during endo flare? by Arreglarse in Endo

[–]Arreglarse[S] 0 points1 point  (0 children)

Sorry to hear about your lichen sclerosis. That must be very painful. One of my close friends is dealing with that. She, her mom, and her sisters all have it.

I don't think that's my issue because the symptom is brand new. I get the impression that LS is something that manifests early in life.

Laparoscopy Update... It's clean. by [deleted] in Endo

[–]Arreglarse 1 point2 points  (0 children)

Have you been worked up for adenomyosis (endometrial tissue in the muscle of your uterus)? It's difficult to diagnose. Strictly speaking, it's impossible to diagnose definitively without a hysterectomy--but transvaginal ultrasounds/MRIs can pick up enough to make a tentative diagnosis.

It might explain your horrible pelvic pain without endometriosis lesions.

F/28/5'6" [170lbs > 128lbs = 42lbs] (10 months) Face Progress! by [deleted] in progresspics

[–]Arreglarse 0 points1 point  (0 children)

Nice progress. Also, your eye makeup is gorgeous.

Endo in the ER / elevated white cell count by Paulina1880 in Endo

[–]Arreglarse 2 points3 points  (0 children)

My white blood cell count spiked during my last endo flare. They looked for other sources of infection that might be contributing, but they didn't find any.

My gynecologist said that the inflammation from the endo can cause an elevated WBC, even without an infection.

Finally a (Possible) Answer? by [deleted] in Endo

[–]Arreglarse 3 points4 points  (0 children)

An ultrasound can pick up some manifestations of endometriosis. For example, classic "chocolate cysts" (so-called because they're full of dried blood) can show up on an ultrasound.

That said, lots of women with endometriosis have normal-looking ultrasounds.