“I have Endometriosis!” Now what?

You doctor gives you the results of your laparoscopy. He/she shows you the picture  of your uterus, ovaries, cul de-sac, all splotched up with red, pink, purple-ly looking blobs of jelly looking gunk. He grabs another shot; there are some cobwebby things strung all over your pelvis and they remind you of left over Halloween decorations. What is this stuff invading your insides, you ask? Then he says it: Endometriosis.

“I have endometriosis,” you say. But what does this mean? What do you do now?

Endometriosis is the presence of endometrial tissue, tissue that is normally shed during menstruation, growing outside of the uterus. The most common locations for endometriosis to grow are the Fallopian tube, the outer surface of the uterus, the cul-de-sac, the tubes, the ovaries, and the intestines. It is not uncommon for women with intestinal endometrial implants to experience bleeding with bowel movements that coincide with their endometriosis symptoms. The fact is, endometriosis can be found anywhere in the body. Less common places outside the pelvic cavitiy for endometriosis to grow are the liver and old surgical scar, the brain, and even the lung. These instances are very rare, but it has been reported. Cerebellar Endometriosis

So, what do you do now? What are your treatment options?

Your surgeon most likely removed all visible traces of endometriosis during your operation. Whether your endometriosis was excised or burned off with lasers, it will return in time. Endometriosis is a chronic condition with no known cure. Treatments and surgeries only work to mask the symptoms or hinder the growth of the disease.

Unless you suffer from intense migraines, have had estrogen receptive cancer or a blood clotting disorder, or wish to get pregnant, your doctor is likely to offer a combined hormonal birth control option. This may be in the form of the pill, patch, or ring. All of them have their pluses and negatives. Some people may experience side effects while some may not. Only you know if this option is a viable one for you.

If you choose to go with the pill, you now have the option of taking the 28-day packs and having a menstrual period, or taking one of the newer pills that are taken for a continuous 3 months before having a menstrual period.   The patches are convenient and can be worn for three weeks and taken off during the week of your period. But they have a limitation – you have to be under a certain weight for them to fully effective. The ring is also a convenient form a hormonal birth control that doctor’s say helps with endometriosis. It’s easy to use and the only possible downside could be forgetting to take the ring out after the third week.

There are also progesterone only options – pills and IUDS. Ovulation is suppressed withthe pill form and there are side effects, including an increased risk for blood clots. The IUD is effective in reducing menstrual flow, or even stopping menstrual flow in some women. This can be a huge relief to women who had problems during their periods. The side effects are not often a problem with the IUD as with the pill because the progesterone is in a much lower concentration (1/7th that in the pill form), and it mostly remains within the uterine cavity.

Other hormonal treatments for endometriosis:

Danazol– a form of testosterone that reduces your level of estrogen. This places you in a psuedo-menopausal state withappropriate side effects. This comes in a pill form.

GnRH Antagonist – This medication overflows your system with a naturally occuring hormone and shuts down ovarian production. It’s side effects are similar to Danazol only milder in nature. These are given in injections or inhalation form.

Gestrinone – This medicine works much like the others in this category, yet it effects the estrogen production in the ovary. The side effects are similar to the others, as well, and is taken twice daily.

** My personal opinion, based purely on experience: I have tried several brands of birth control pills and none of them controlled my pain because they didn’t stop my bleeding. They also aggravated my migraines and made me unbearably nauseous. I tried the Seasonal brand that is taken for 3 month and experience 3 months of straight, non-stop bleeding! Not what the pills intended, at all! I also became sick with my stroke-like migraines, couldn’t eat for most of the three months, and bled all the time! My pain was non-stop! I have tried the ring which also didn’t really work, and the patch was denied to me. I have tried the Depot Provera shot and could only suffice, barely, the one injection that lasted 3 months! It was hell!! Migraines. Cramps. BLEEDING – non-stop! For three months! My experience with the MirenaIUD has been much better. I haven’t had a really period since 1 month after having it instertedin April of 2007. So, yeah, that’s two years! Withthis has gradually come less and less pain. My pain sources of pain is from recurrent benign ovarian cysts. These can sometimes get pretty big before they either burst or dissolve. This is the only draw back I have found, so far, with mirena.

 

Resources:

Danazol Drug Information

GnRH Wiki

Gestrinone Information

Mirena IUD

Advertisements

6 responses to ““I have Endometriosis!” Now what?

  1. Hi Endochick,

    Thanks for writing an intro to endo post for the many new women who are just coming to find out that they have endo, for the ones who are trying to learn more about the disease to support us better, and for those who are just starting their learning journeys. It’s crucial to have accurate information out there that presents all of the options to these young ladies, as well as the pros and cons of the options.

    I’m similar to you, have tried a “billion” different types of birth control pills but they never regulated my period. Some of them would make me bleed heavier, some would cause me heart-palpitations and other serious side effects that shouldn’t be ignored. Ones that did “help” would only be effective over a short term. I tried the Depo-Provera shot while I was doing my first degree (psych) as my periods were insanely out of control. It was one of the most horrible experiences of my life when it comes to treatment, so I’ve sworn off anything injectable out of fears of another one of these prolonged reactions (the reaction lasted a full 8 months). I’ve done Danazol twice and it worked at stopping my periods but still the pain continued. It was during my first course of Danazol that I had doctors question whether I even had endometriosis since the pain wasn’t controlled with the Danazol alone. I was one of the lucky ones who didn’t have too horrible of side effects on the Danazol.

    My most recent treatment course has been a combination of the Mirena IUD, Arimidex (an aromatase inhibitor I’ll explain about in a minute) and another progesterone-only bcp to help with both the breakthrough bleeding and the side effects of the Arimidex. As my treatment options are decreasing considering that very few of the pharmaceutical treatments have not been effective for my symptoms, I did research into other treatment options and found the recent research concerning aromatase and endometriosis. Aromatase is an enzyme that is thought to be involved in the ability of the ectopic endometrium to produce it’s own estrogenic substances to feed off of. The theory is that if you stop the ability of the aromatase to produce these substances then the endo will “die off”. There is conflicting evidence around this treatment though as another recent study has discounted this treatment,, stating that the enzyme wasn’t found to play as large a role in the maintenance and progression of the disease as originally though. There does seem to be an awful lot of research though backing up the use of aromatase inhibitors.

    As a side note – I would urge caution in trying out the Ortho-Evra patch. There is some evidence that the patch may release more estrogen then it should be. And we all know that estrogen is a big no-no when it comes to this disease!

    Anyway, thanks again for the article. And I like the new look of the blog!

    Hugs,
    Melissa

    • Interesting about the aromatase inhibitor’s. Wasn’t aware of that, really. Will have to look into that. Thanks for the info! Glad you like the new look – needed a fresh, clean look.

  2. I am headed back to the Dr. next month, I have been off BC for 7 months, due to lack of insurance, the pain is super elevated. Thanks for sharing your stories in you blog and congrats on the graduation!

  3. I have suffered with this since I was 23-am now 38! Have had three ectopic pregnancies, during which time I had to have my fallopian tubes removed-so now only invitro could get me knocked up! Too add, I also suffer fibroids and have had cycsts-the kind that bring you to your knees and beg for mercy or surgery(which ever comes first)!! My question is why would I go on birth control when I clearly don’t need it(doesn’t help with pain either) and has tons of side effects/risks?!! I take tons of ibuprofen and if I am lucky, my doctor will toss a small dose of percocet my way. Why is it soooo hard to get a pain pill when you really need one? I mean, c’mon!! I am sick of explaining how painful this is- I bet if it was happening to them it would be no problem. Lawsuits because of addiction? What a self-serving fear. Sorry to vent-can you tell I am close to my period?! It just causes me so much anxiety & dread because I know whats coming! What do you think about lack of med options? Thanks for listening 😉 Lisa

    • Lisa,

      I think the way we are treated by doctors re: pain option is crap, to be honest. I should do a post devoted to it since I have a host of docs that follow me on Twitter in the hopes that some of them might read the darn thing and get a clue. Seriously, though, we are treated either as addicts or hypochondriacs when this disease can be intensely painful regardless the stage. Adhesions HURT. Implants HURT. Trapped blood HURTS. Doctors just don’t understand this. I was lucky enough to have, at one time, a NP who had had endo and could sympathize with me. But now that she’s gone, I’m screwed. I feel alone again. Alone in a world of doctors who are clueless.

  4. Endo sufferers could try giving up all dairy products as milk contain hormones that may upset human female balances. Milk is in many food products as it is such a cheap ingredient (farmers are suffering too)
    It is worth giving it a try and if you give up anything containing wheat too you will see a real difference. That means checking the ingredients on every packet. You will be surprised as you will realise how much of these you have been eating. If you do this you will notice within a week how much less bloated you feel. This will almost certainly make you lose weight too with out dieting and that will please the doctors that always moan that you need to. Camomile tea is great for your symptoms, yuk at first but if this works for you it worth it. After 6 months you can start to have milk again as the calcium is important but never more than 1/2 pint per day abd stick to full fat as it is more balanced and natural and less concentrated. I am no doctor and this is only my personal opinion. Good luck.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s