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Advice on my daughter's health

by Sue
(Sydney, Australia )

My daughter is 26yo, since starting menstruating she has had episodes of excruciating lower right flank pain, with full on shock symptoms - clammy, grey skin, feeling faint etc. This started when we were overseas and she was 13yo and almost ended up in an ER in Moscow, fortunately a friend who is a Doctor suggested some Cal-Mag drink and rest, and she recovered after 1-2 days. Again when she was 20yo and I was not with her, she had another incident and ended up in a fetal ball in the corner of her office, again grey, clammy skin and in full-on stabbling pain again in the right lower pelvic area. She did all the tests, USS, bloods, etc and the diagnosis was a ovarian cyst had burst, and all they could find was some sort of residue and then a large cyst on the left. We are talking specialists in one of the most well-thought of clinics in Sydney. She continued with cyclic pain in the same region, when it happened she lost appetite, felt nauseous, was off work for 3-4 days. She also had acne during the pre-menstural days, and some dark hair growing on her upper lip. She usually has a sub-normal temp and low BP when this is happening.
Earlier this year she had another episode, we had been dealing with the cyclic problems with Magnesium, Vit C IV, exercise and a form of Assists that helped but did not cure.
When she had this major episode in Feb-March I decided this was it, with the help of a holistic GP in New Zealand who has helped me and our local GP who was determined to get to the bottom of this we started a round of specialists and USS and so on. Even went to ER room when the pain was 7-8 on the scale, still nothing. One Gynaecologist confirmed an earlier diagnosis of PCOS, another holistic GP found her thyroid had gone very high and was refusing further IVs until she went to a thyroid specialist (NZ GP said no way this was not the problem), her prolactin skyrocketed and she was off work for days. Pelvic USS found adnexal mass - probably ovarian cyst, holistic GP thought maybe chocolate cyst bleeding causing the pain, appendicitis was looked for and still nothing. Finally I got her to a very prominent Gynaecologist in Sydney - Prof Michael Cooper. He did an internal USS - earlier she had refused to do this as it was too painful. He said almost immediately - mullerian anomaly - explained what he thought and sent her for 3D USS which confirmed this as a non-communicating right uterine horn - and endometriosis in the area. His suggestion remove the anomaly as it posed a very real life-death risk if she got pregnant in that horn, and get the endo out and then into a full exercise, dietary and lifestyle improvement to sort the reproductive area out and be able to fall pregnant. Holistic Dr in NZ meanwhile had me on progesterone for my situation (different story) and suggested my daughter go on it too. She started on the cream and better diet (organic chicken/meat, vegges and gluten free) which helped and she started losing weight and feeling better. She went ahead with the operation to remove the anomaly and the Gynae found a large amount of endo in the cul-de-sac covering bowel and bladder as well as pulling the bowel up into the uterus. He was an extensive operation and she is now recovering under directions from our GPs (Sydney and NZ). She still has acne and dark hairs and while she is losing weight and eating better, exercising more and there was no evidence of PCOS in the operation, I want to ensure her recovery is a full one. My questions are - 1) what causes mullerian anomalies occurring - it was from me as it forms in the early stages of the fetus - and before I discovered I was pregnant with her I had had a major incident with mouth ulcers and physical exhaustion - and 2) what program does she need to be on now in relation to progesterone and other related supplements? She does not plan to get pregnant for a while and Gynae recommendation is a Mirena IUD device which she wont be doing. And 3) were we right to go ahead and do the op or was there a better more holistic handling we should have done first. My prime concern was the amount of pain and discomfort she was in almost chronically despite using magnesium, Vit D and other supplements to handle. She does not take painkillers and never has in her life - expect twice during these incidents mentioned above.
I want her to make a full and complete recovery so I am coming to you as I have been reading your website and I like your approach and solutions you give the other ladies.

Comments for Advice on my daughter's health

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May 27, 2012
 calcium
by: muriel

Not sure if this is any help at all but my daughter had terrrible cramps while in college. She ended up in the ER and they did different tests. She was 21 and the gynecologist put her on birth control pills. She and I hated the idea of her being on them. She took them for 3 months and then said, "Mom, I'm becoming psychotic. I have to go off of these." So she stopped and the pain eventually returned. Years later, she went back to the same gynecologist and he told her to take calcium as it would relieve the cramps. It did. Worth a try.
May 28, 2012
 Advice on my daughter's health
by: Wray

Hi Sue Many thanks for the kind words. I find it extraordinary that she had to have so many tests covering so many years before the problem was diagnosed. A burst Ovarian Cyst does cause a sharp shooting pain, but nothing like the pain you describe. A scan of the ovaries normally reveals PCOS. The pain you describe fits Endometriosis perfectly, it can be excruciating. Possibly if this had been diagnosed when she was 13 the progesterone could have helped reverse it, but I think the op now was a very good thing. If I'm correct your daughter has a Unicornuate Uterus. It was lucky the prof knew his stuff, as it's very rare, and it does lead to major life-death complications if a pregnancy occurs without it's prior removal. If I'm wrong, the whole paper discusses Mullerian Duct Anomalies, it's very long, but covers all the anomalies. One section says….. "The vast array of structural anomalies seen in müllerian duct defects results from interruption or dysregulation in müllerian-duct development at various stages of morphogenesis. Well-known factors, such as intrauterine and extrauterine elements, genetics, and teratogens (eg, diethylstilbestrol [DES], thalidomide), have been associated with müllerian duct anomalies." These are a few more papers, see here, here, here, here, and here. It's very interesting but most of the papers mention endocrine disruptors. The anomalies do occur in the early stages of foetal growth, it could be you were in contact with some, unwittingly, we all are. There are now over 100 of them, see Our Stolen Future. There is a group of genes known as Wnt, these are critical for morphogenesis. One in particular called WNT4 is critical to female foetal genital development. If they get disrupted in early foetal growth, anomalies can occur. Continued below.
May 28, 2012
 Advice on my daughter's health Part 2
by: Wray

Hi Sue This rather long paper here describes how BPA and HPTE can disrupt normal signalling. Both these are endocrine disruptors. Epigenetics is a relatively new discipline, it's the study of how genes express themselves, nothing to do with a change in the DNA structure, which falls under genetics. Research is uncovering a large number of epigenetic changes, which are often not discovered until puberty. It's lead to the term 'the foetal origin of adult disease'. They've discovered that it's not only toxins which can effect change, but a lack of vital nutrients too. One of which is vitamin D. Some of the diseases caused by a lack of vitamin D are Type 1 diabetes, heart disease, some tumours and in all probability autism too. I'm sure they'll find more. Vitamin D is needed for every cell to function normally, it does regulate gene expression, and is also involved in Wnt signalling. Progesterone is also involved in regulating gene expression, in fact they work together, see Progesterone and Vitamin D. The Acne and hair on her lip indicate a higher than normal testosterone level. Some of the Mullerian anomalies do express high androgens. You mention her loosing weight, so I'm assuming she was at one point over weight. Excess testosterone is notorious at causing this, see here and here. Progesterone does decrease testosterone levels as it increases SHBG, see here. Testosterone, along with oestrogen and a lack of vitamin D, also causes Insulin Resistance. A lack of vitamin D also causes weight gain, see here, here, here and here. Continued below.
May 28, 2012
 Advice on my daughter's health Part 3
by: Wray

Hi Sue And more here and here. Her prolactin shooting up doesn't surprise me. Excess oestrogen causes this, but stress is a huge factor, she has been through much. Acute, uncontrollable stress depletes dopamine, leading to depression and a rise in cortisol and prolactin, tyrosine reverses this. Tyrosine is essential for any stressful situation, cold, fatigue, emotional trauma, prolonged work, sleep deprivation, it improves memory, cognition and physical performance, and is used for weight loss treatments. Although a non-essential amino acid, tyrosine is one of the most important. It's the precursor to the neurotransmitter dopamine, and the stress hormones adrenaline and noradrenaline. It's also the precursor to the two thyroid hormones T3 (triiodothyronine) and T4 (thyroxine), plus melanin, the pigment found in hair and skin. It's part of the enkephalin peptide involved in regulating and reducing pain, and increasing pleasure. Lack of protein and stress lower tyrosine levels, with a subsequent reduction in dopamine. A drop in dopamine increases levels of prolactin, the hormone of lactogenesis, but also an inflammatory hormone. The rate limiting step in dopamine synthesis is the enzyme tyrosine hydroxylase. Insufficient levels of vitamin D inhibit tyrosine hydroxylase, resulting in a disturbance in the dopamine pathway. Dopamine is essential for motivation, happiness and vitality. It sounds as if you could have done with some when you were going through the physical exhaustion. I'm very relieved you have not opted for the Mirena. You might like to see our page on Contraceptives and this on women who've used the Mirena. Endo is caused by oxidative stress, which leads to Inflammation. Oestrogen exacerbates it, as it's a mitogen causing cells to proliferate. Plus it's an excitatory, inflammatory hormone, it also causes water retention and weight gain. Prolactin is also an inflammatory hormone. I normally recommend no less than 500mg/day progesterone if severe pain is experienced with endo. I'm not sure what her pain level is at this stage, but the last thing you need is for it to grow back. Which it will if the oestrogen is not kept under control, and the oxidative stress continues. Continued below.
May 28, 2012
 Advice on my daughter's health Part 4
by: Wray

Hi Sue Your daughter also needs high doses of all the anti-inflammatory aminos, plus at least 5000iu's per day of vitamin D. The stress will have depleted all the B vitamins too. I'm delighted she's eating organic food, you might be interested in reading through our Nutrition page. The Paleo Diet is good, it eliminates all grains, legumes and dairy. The other diets on the page are good too, but take time adjusting. If she hasn't had one, could she have a vitamin D test done. I know it's often difficult in Australia, almost impossible in NZ. These are sites that send out test kits and have more info on vitamin D…. Vitamin D Council, GrassrootsHealth and Birmingham Hospital. Blood levels should be 70-100ng/ml or 175-250nmol/L and not the 30ng/ml or 75nmol/L most labs and doctors regard as adequate. The minimum daily dose should be 5000iu's per day, although the latest research indicates it should be 10,000iu's per day, see here. I hope this all helps and hasn't given you indigestion! Take care Wray
Aug 26, 2012
 Bicornate uterus progesterone will work
by: Anonymous

Hello

I had a bicornate uterus it caused me extreme pain nothing I ever took in my younger years worked, I even considered suicide as the pain was that bad. Cold, sweaty ,faint and as stiff as a board all over from top to toe, unable to move the only thing in my world was pain, mostly for a few hours but sometimes a few days I would also have a black sandy like discharge for 8 or 9 days after my periods finished. I had 3 wonderful children and after my 3rd child things went from bad to worse I was diagnosed with a mental illness and told I had a low pain threshold.Thats when I walked away from doctors.
I started progesterone therapy ( I used small amounts during my period) I used it all month long it stopped all my symptoms except the sandy spotting. I went on to have a hysterectomy.
As depressing as it sounds this is a message of hope I think your choice of progesterone is going to be the right move.
Aug 27, 2012
 Bicornate uterus progesterone will work
by: Wray

Hi there Thanks so much for this, hopefully it will help Sue, but it also helps me too. I find it so shocking you were diagnosed with a mental illness and had a low pain threshold. Having read the studies, there is immeasurably pain with a bicornate uterus. No man would tolerate so much! Take care Wray

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