A close friend of mine had to have an ovary removed early last year due to a cyst. We all assumed (wrongly) that it would help out with her severe cramping and bleeding. It turns out that no, she continues to have severe pain from her endometriosis.
Her doctor is going to try Anya birth control. After that I think her last option is a complete hysterectomy. This is a nightmarish option for her because all she has ever wanted is to be a mom.
I was wondering if anyone had any tips or treatments that maybe she could ask her doctor about to avoid this possible result?
I have always been under the (perhaps false) impression that a sure-fire cure for many cases of intractable endometriosis was actually getting pregnant.
Or was this an old-wives tale that I grew up with and internalised as gospel???
A combined pill taken back to back or a hysterectomy are the only options for her? That’s a little odd, usually the doctors work through more stuff.
Perhaps she has such a severe case that all her pelvic organs are matted together, meaning pregnancy is a non-starter and hysterectomy is the best option. It’s sad, but it happens.
The options for endometriosis are all desined to prevent menstruation or to remove endometrial deposits on the other organs, they are as follows:
Medically induced pseudo pregnancy: i.e. the pill back to back (Anya), progesterone implants, progesterone only pills, Depo Provera etc.
Medically induced pseudo meopause: Danazol, Gosrelin etc. Can only be used for 6-12 months and give symptoms not unlike the menopause. Usually tried before hysterectomy to see if the woman would benefit from having her ovaries removed.
Surgical resection of deposits: During a laparoscopy the endometriosis deposits are burned away using a laser. In expert hands can be as effective as medical treatment, and may last longer.
Hysterectomy with oophorectomy: removes uterus and ovaries, not a minor operation, and she will require HRT afterwards.
Many women with endometriosis cannot get pregnant without help (tubal microsurgery, IVF with or without donor eggs etc) but during a pregnancy there is no menstruation, so the endometriosis does go into remission, but it is not a cure.
If your friend wants to have kids she needs to tell her gynaecologist this. She’ll need some investigations to see if this is a realistic possibility. If they decide to go for IVF well and good, if they decide to just work on things naturally she’ll need to discuss her requirements for adequate pain relief with her doctor.
The very weird thing about endometriosis is that the severity of the disease in no way reflects the severity of the symptoms. Some women with only 1 or 2 deposits are in agony, some women with massive adhesions and cysts don’t even know there’s a problem. It’s estimated that up to 10% of women may have some degree of endometriosis.
One of my girlfriends has had great success with diet - I know she cut out wheat.
I did a lap when I was undergoing infertility, it did help with the cramping.
As for wanting to be a mom - endo is a leading suspect in infertility. If hers is bad, she may not be able to conceive even with a uterus. (Ovarian cysts are another indicator). There are other ways to momhood - my infertility gave me a wonderful son via adoption. She should try to conceive, but the sooner she gets her brain around “it may not happen” the faster she can move on to consider other options (we chose adoption, but the “stay childless and be able to spend all our time and money on ourselves” option was really attractive at times).
It seems your friend has a doctor with a very radical approach to endometriosis. I was diagnosed about 7years ago and it makes my life quite hellish at times, but none of my doctors (and there have been many) has ever suggested a hysterectomy. In my experience a lot of doctors do not know enough about the different treatments available and I would definitely advise your friend to get a second opinion. There are many options available as irishgirl has outlined before one considers a hysterectomy. It should be a last resort when all else fails and preferably after she has at least attempted to have the children she wants.
Dangerosa- medically speaking there is no reason why diet would have any effect.
IBS can be worse with menstruation, and can also give severe cramping pain in the lower abdomen, and IBS might respond well to dietary changes such as cutting out wheat.
Endometriosis is caused by deposits of endometrial tissue on the abdominal organs, The deposits then bleed during menstruation, and the inflammation and adhesions this causes leads to pain. These ectopic deposits are believed to implant due to retrograde menstruation (i.e. the blood goes up the tubes and into the abdominal cavity). All women have some degree of retrograde menstruation, it’s a mystery why some women have endometriosis and others don’t.
My wife has endometriosis and went through the options 1-3 as discussed by irishgirl. (She’s actually had the laparoscopic surgery three times.) For your friend, it sounds way too early to consider a complete hysterectomy.
We did several attempts in in-vitro fertilization, also using ICSI and assisted hatching.
She has found relief by changing her diet. Placebo effect? Some weird allergy or interaction? Misdiagnosed to start with and she doesn’t have endo but has a wheat allergy or Crohn’s or something?..no idea. However, there are a ton of women who do claim relief from endo by making dietary changes - and it can’t hurt to try - a diet change is better than having your uterus ripped out (for most people).
By the way, my friend has a M.S. in Biology and works in research medicine for a hospital, so we aren’t talking about someone who buys into crystal healing or spends her time opening her chakras. (I have some nutty friends who believe strange things, this woman is not one of them). After years of having a lap done every eighteen months and lots of attempts at changing her hormones, she was looking at a hysterectomy at 30 and decided to give this a try. Its been years and there have been no more laps needed.
I also had/have severe endo.
Also no one mentioned hysterectomy to me.
I twice had the laproscopic surgery, with seven years of relief between. It was day surgery and I was right as rain in but a few days.
The surgeon, who specializes in this desease, told me I had one of the worst cases he’d seen, but as was mentioned, he saw many women with much worse symptoms than mine, quite regularly. The second surgery began the early onset of menopause, which, as he predicted, solved all my problems. And he was right. The extremely irritating side effects of menopause notwithstanding.
For many sufferers, it provides complete relief. Menstrual periods completely stop for some users, so there’s no aggravation of the cysts.
It completely stopped my pain. I’ve raved about it on the boards before-- I think it’s the best damn thing since cheese in a can.
The only side effects I had was a slight, temporary weight gain of about two pounds, (the Pill made me moody and nauseous-- I had no such problems with Depo) and pain at the injection site. When I first started taking it, I had a lot of discomfort in my hip where the shot was given-- to the point where if I rolled over on it while sleeping, it would make me cry out and wake up. That lessened over time, but I still get sore for a couple of days. Still, it’s *mucho *worth it.
Dangerosa I’m sorry if I implied that your friend was some sort of kook, I absolutely do not doubt that the changes she made helped her, I just can’t think of a scientific medical reason why it would.
Lissa also really glad that Depo works so well for you, but if you’re going to stay on it for longer than a couple of years ask your doc if you should be taking something to prevent osteoporosis- they’re starting to recommend women don’t use Depo long-term.
I did a little searching to see if there were medical reasons. There has been a study out of Italy linking high consumption of red meat to endo, but that was the only study I could find. Apparently, some foods affect estrogen production and other hormones? Who knew, but that is apparently the deal with red meat. The wheat seems to have more to do with bloating, so it may not cut down on the endo, but with lack of bloating in the abdomen, it may make it asympomatic? Since endo is so strange - some women who look like a horror movie inside from endo have no symptoms, others are incapacited by pain and the lap shows very light endo - and the disease is so unresearched (based on my googling), I’m not throwing out anything.