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Managing endometriosis

  
 
Disco is My Class War
16:28 / 23.04.06
I'm posting this in the Convo because the Lab seems way too stark and tech-oriented for the info I'm looking for. This is also the kind of thread I think would ideally go in the proposed 'body shop' forum, or a forum dedicated to health, body matters, sex etc.

Anyhow... My partner A. has what looks like endometriosis. I am ethically conflicted about whether I should talk about my partner here, because she's generally quite reticent about sharing the intimate details of her personal life, and this is personal. On the other hand, it's about a health issue which may turn into a useful resource for female Barbeloids. Also, the situation is driving both of us slightly mad. I need so badly to vent. Besides, the "I have a friend who...." line is tacky. So, honesty.

I say it looks like endo because endometriosis is not the kind of illness a doctor can diagnose easily, and nine months after she first went to a doctor about the symptoms, they are still not sure what she has. She's been having pretty irregular bleeding, cramps and bloating, and 'period pain' for some time (like, three years). For as long as I've known her, her energy levels have become lower and lower, despite the fact that she sleeps well and is otherwise pretty healthy. In October last year she had a pelvic infection -- diagnosed as PID -- and she went on 2 simultaneous courses of antibiotics, which brought on a whole lot of digestive problems. The cramping, bloating and irregular bleeding left for a month then returned, and the digestic problems got worse. Her old doctor seemed useless, so we changed doctors. The current doctor has done an ultrasound, ruling out cancer (which is pretty lucky cuz she already had that, a long time ago) and some other things. But it looks like a solid diagnosis of endometriosis depends on keyhole surgery under general anaesthetic, otherwise known as a laparoscopy. In the public health system, we have to wait weeks to see a specialist, and then possibly months, maybe a year, on surgery waiting-lists. And this is just for diagnosis! Then, if it's endo, the treatment is either to go on hormones, permanently, or a hysterectomy. Both are pretty huge and scary.

Does anyone here know what I'm talking about? Has anyone here had it, or know someone who has? Does anyone know of good holistic therapies to manage the pain and associated crap? No-one seems to know what causes endo, or how to make it go away permanently without stupid amounts of hormone treatment, constant pregnancy, or removing one's womb. There are heaps of suggestions online, but I don't know what information can be trusted.

At the moment A. is at her wit's end. She's not working and finds all activity, even daily chores, a huge effort. She gets tired after being out of the house for two hours; lately she hardly leaves the house because she's scared she'll get a bout of cramps, or exhaust herself. Our sexual life is, to put it mildly, not what it once was. As I said above, it's driving us both mad: she's in pain a lot, and it seems that endo brings on not only bleeding and cramps but fortnightly, or weekly, PMT. Despite my efforts to be a really good, understanding carer, I've taken on the lion's share of household chores, gardening, shopping, etc and sometimes I just lose patience. We're both pretty strong and we'll be okay, but I am about to start agitating for some trials of 'management' therapies, just to give us some hope while we wait.

Any help or advice or even just sympathetic groans would be greatly appreciated.
 
 
*
17:36 / 23.04.06
A friend just had surgery to manage this, and it seems to have helped her a lot, but as I understand it, endometriosis usually returns even if the surgery is effective.

I'm sorry to hear about the pain your partner is going through and the effect it has on both your lives. I'll talk more later when I have time to do it properly.
 
 
elene
18:56 / 23.04.06
Coincidentally, my best friend was in hospital this week to have a cyst removed from her right ovary. As it turns out the entire ovary was eaten with endometriosis and they removed it complete. Apparently the left ovary has also suffered a long-term chronic infection and is in a very bad condition too.

She's had problems - severe cramps, very heavy periods, abdominal pains - for years and she has described them accurately to her doctor. Once they detected the cyst she was put on hormone therapy to suppress it and that apparently worked but the problem returned soon after she stopped the therapy. Eventually it was decided that the cyst needed to be removed.

I was inclined to think women are not taken seriously when they describe these problems, but then I read a little about endometriosis. There is no cure, even removing the material doesn't necessarily imply it'll stay gone, and while oestrogen suppression - using progesterone, for instance - can work, to do so it must be continued until menopause.

You both have all my sympathy, Mr Disco.
 
 
ibis the being
20:35 / 23.04.06
Ugh, that is so awful. My sympathies to A. I do know what endometriosis is but I can't say I know a whole lot about it. I certainly don't know of any holistic or homeopathic therapies, but I have heard many times that going on the Pill or similar hormone treatments can help. I think I understand your/her aversion to hormone therapy, but I wonder if the risks may be outweighed by the benefits for her?
 
 
subcultureofone
21:08 / 23.04.06
please accept my sincerest sympathetic groans. i had a laparoscopy in 1988 or 89 to rule out endometriosis; turns out i had ovarian cysts. the surgery was a day-stay procedure- check in at 8am, leave around 2pm- and i had no complications. i have an almost imperceptible half inch long scar along the lower edge of my belly button.

for non-allopathic therapies, i suggest accupuncture and chinese herbal medicine. having worked in women's healthcare for many years i know several women who have had success with this combination. however, i have one good friend who only got relief from hormones. the progesterone-only shot [depo-provera in the us] caused too many side effects for her, but birth control pills worked. it can be very frustrating to have to keep trying different therapies, because they all require weeks or months of time to see [or not see] a result. fortunately, when women find something that works for the pain and other abdominal discomfort, they often feel more energetic & have fewer pmt-type symptoms. perhaps because they're finally able to get a full night's sleep. i hope your partner finds some relief soon.
 
 
subcultureofone
21:13 / 23.04.06
or acupuncture.
 
 
dmj2012
23:17 / 23.04.06
subculture is right about TCM (Traditional Chinese Medicine). I'm a practicing DOM (Doctor of Oriental Medicine), and I know from experience that Chinese medicine can do wonders for women suffering from endometriosis. The acupuncture works fine, but I feel it's incredibly important in a case like this to make sure to go to someone who uses Chinese herbs as well, as an internal medicine case like this virtually requires an herbal formula.

Do a little research on people in your area and find out which ones do herbs in addition to doing acupuncture.
 
 
*
23:53 / 23.04.06
What TCM differentiation does endometriosis usually tend to fall under, Sandman? It sounds to me like Liver Blood stagnation, but I was never particularly good at this.
 
 
Joy Division Oven Gloves
00:08 / 24.04.06
My sister was diagnosed with endometriosis about 7 years ago. Her condition is complicated by an underlying genetic condition that impairs tissue in her abdomen healing properly when damaged so I'm not sure how helpful going into detail about her experiences would be, but I know with the endometriosis she found these people useful National Endometriosis Society

Acupuncture and hypnotherapy have both helped her manage pain and she uses a tape made by her hypnotherapist for her at night to help her sleep.

I'm aware right now your energy and focus will be on your partner's distress and the ongoing medical process but, if you haven't already, you may want to look into what benefits your partner (and you as a primary carer) could be entitled to, especially if the condition is likely to be long-term. I'm not sure where you live or what your financial circumstances are but if your partner is unable to work it might help replacing some lost income and/or giving you the resources to get some support with the cleaning/shopping etc. and help take the pressure off you both a little. If you're in the UK Disability Alliance give good, up to date information about a range of benefits.

I'm glad you feel you both have the strength to deal with this and I hope your partner's condition improves soon.
 
 
dmj2012
00:27 / 24.04.06
(id)entity said: "What TCM differentiation does endometriosis usually tend to fall under, Sandman? It sounds to me like Liver Blood stagnation, but I was never particularly good at this."

Liver Blood stagnation is one of the more common causes when looking at a differential diagnosis of endometriosis. In some cases Cold stagnation of the Uterus and in more complex cases there may be several patterns present.
 
 
redtara
01:42 / 24.04.06
I suffered with mind altering pain for one day most months from fifteen or so. Not sure if it was endometriosis, but saw an article in Cosmo or something and it ws all very familiar. Doctors never took me seriously, not able to see me while in pain, unable to focus visualy or mentaly, vomiting convulsivley, drenched in sweat and delirious. My mother, sister and daughter are all similarly dibilitated. Monster periods, savage PMT, utterly dibilitating pain.

My sister and daughter are taking the pill. The birth of my daughter seemed to sort everything out for me and my Ma had a hysterectomy for fibroids. i have been told that wearing magnets on your knickers, just two fridge magnets either side of the fabric at the front under your navel helps when worn all the time? Not tried that one. The only thing I ever found that could put a dent in the pain was a big fat spliff.

Best of luck finding a solution. Pain is shit.
 
 
Saturn's nod
07:28 / 24.04.06
Dr Christiane Northrup's book 'Women's bodies, women's wisdom' (U.K. Amazon, U.S. Amazon) has a lot of stuff on endometriosis and lots of suggestions. She's a ob/gyn with an interest in holistic treatment, and is Asst Prof of clinical ob/gyn at University of Vermont College of Medicine. She suggests that symptomatic endo perhaps arises when someone is producing self-antibodies to the endo tissue (P168), since non-symptomatic endo is very common.

Amongst other things she recommends trying
1) eliminating dairy (some women get complete relief just from this)
2) increase consumption of soya and brassica family plants: broccoli, cauli, cabbage, greens etc
3) supplement essential fatty acids [walnuts, linseed oil, hemp oil, oily fish etc] and take a multivitamin–mineral supplement rich in B complex, zinc, selenium, vitamin E, and magnesium. [amounts recommended listed in the book, pm me if you want me to type it out]
4) full body massage every two weeks - some women experience complete pain relief from full body massage.

Some details on her website.

In the book she also has suggestions for meditations for healing:

'Ask yourself the following questions and answer them honestly:

What are your emotional needs?
What would you like to see happen in your job or your life that would nourish you fully?
Are you caught up in competition of any sort in your life? Are you willing to make changes?
Are you getting enough rest?
Do you believe that you have the power to change the conditions of your life?'

I hope this helps, good luck to both of you. I know people do get better without permanent hormone treatments or hysterectomy. I have a good friend who was really crippled with endo a few years ago and now she is getting really well, was able to return to work full time and now has a baby as well, so don't let the talk of infertility scare you if sprogging is part of your plans.

I've suffered a low energy and pain condition myself, and I'll mention what I found helpful in case it seems worth trying. Two of the things which helped me a lot are: art and diet. I did an elimination diet (very simple boring food for weeks, gradually adding in one food at a time and observing the effects) to work out what agrees with me, and if I stick to that I am able to function at pretty much normal energy levels. (Please do pm me if this is useful and you want more info on the route I took.)

The art: I make sure I have drawing paper and pens, pencils, crayons, pastels, handy and I work on just letting myself scribble. Sometimes I set myself a target e.g. 'I will cover 16 sides of A4 before I think about whether anything looks good or not', and just go for it, covering the paper with lines or blocks of colour. I don't think I have a great gift for art, but it's not about the product, it's about engaging in a process of listening to the non-verbal stuff that comes through the colours and shapes I make when I just play with lines on the paper and observe my play compassionately.
 
 
elene
08:19 / 24.04.06
Great post Saturn's nod. Reading your first four points I realised I could, and should, have mentioned all of those, because they've all been used by my friend with varying, but often considerable success over the years.
 
 
_Boboss
09:35 / 24.04.06
emergency endometriosis procedure for men:

1. jump to it
2. ibuprofen (three x 200mg tablets if it's really bad)
3. nearly-scalding hot water bottle
4. hold hand and squeeze/be squeezed until pain tops out
5. camomile tea if need be to get her back to sleep

about ten minutes of panic and horror is generally all it takes to get things steady in my experience. if time/circumstances allow, then the aforementioned big fat spliff is handy to have on standby. (in my experience the attacks come on with some ferocity before sinking back to backgound-bad. i'm aware the pattern isn't always like that though, so the above may not be useful.)

for long-term remedies i cant say much other than that acupuncture definitely appears to help. having a laporoscopy to remove the inflamed tissue is pretty heavy-going (it's a routine operation, but not really a minor one), requiring a good couple of weeks of bed-bound recovery time but i have seen it remove 90% of symptoms for a period of up to about two years, which was far more effective than i had expected it to be.

posh spice said hers went for ever after having her first baby, but then again she's posh spice, so it would.

good luck and hold tight.
 
 
Disco is My Class War
11:37 / 24.04.06
Thanks heaps for the responses, everyone has been very, very helpful. We are both getting very well-informed, and it makes everything less scary. I know a couple of good acupuncturists, and one who works with herbs as well, I'll see if she is up for it. I am far more into complementary therapy stuff than she is, and am a bit wary about even suggesting ascetic stuff like elimination diets and affirmations and so on. I kinda believe that if that's your thing, you gotta want to do it yourself. And A. is not the type. A big fat spliff is sounding better and better.

JD, we are not in the UK, and she's already on benefits, but thanks for that advice. I guess we're also lucky in that she works freelance, if anything, and can beg off deadlines rather than dealing with leave from a fulltime job. The infertility thing doesn't really affect us, luckily. If we did have kids, it would almost certainly be by adoption, or me doing the sprogging as a last resort.

Gumbitch, that sounds like an awesomely finessed strategy.

Lastly, does anyone know of painkillers that don't fuck with your stomach as much as Ibuprofen, Codeine or Naproxen? We've tried all three, and each produces its own special nauseating stomach cramp. Painkillers are just bad for you, right?
 
 
Sjaak at the Shoe Shop
12:17 / 24.04.06
My partner has been suffering from endometriosis for about 10 yr now. This was aggravated by severe digestive problems. She had keyhole surgery but only for inspection, followed by hormone treatment.
This did not do much good painwise, but the doctors believed that the endometriosis should be gone. Most pain was now attributed to her intestines, but again medically they could not make much sense out of it. Later diagnoses confirmed that the endometriosis were indeed not gone, but it was never quite clear if they were really the source of the pain.
The hormone treatment was quite bad, and it is not something that quickly wears off. She has been suffering from aftereffects for years.
Over the years the situation actually got much more manageable, mostly through a (forced) change in lifestyle and dieting.
The best thing that happened was pregnancy. We had been told before that this is usually the best cure of all, and indeed this proved to be the case. Ever since she has been more or less free of pain, and is now relatively fit (apart from a ruined back & pelvis due to the pregnancy, but that is a different story)
A couple of conclusions that I can draw from the experience is that :
it is not easy to diagnose or cure, but that over time it usually gets better (although it can take long)
Pain is horrible, and chronic pain seriously affects your joy of life
Very important but not yet mentioned here much: Although we fought it over the years it really took its toll on our relationship. One is it becomes quite disbalanced, but the worst was that it becomes really unpleasant for her to touch and hold each other, or hug. It is ok for a while, but after a few years it is pretty grim.
Glad we kept going though
 
 
Cat Chant
12:30 / 24.04.06
All I can really offer is sympathy, I'm afraid. I also have some of the above-mentioned knicker magnets (specially-designed for womb pain) which I could mail to you if you like, though since I had one of the top three worst bouts of period pain of my life while wearing them, I don't actively recommend them. I have friends who swear by them, though (I mean, I know it's 'complementary', but it's quite 'no-harm-done'/'worth-a-go' compared to things like affirmations, which are difficult to talk yourself into if you're not sympathetic with the idea). PM me if you want them.

Anyway, really just my best wishes to you and A.
 
  
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