Nervous.

[mj78]

This is a list of my symptoms:

Aches and pain in all of my bones (Not just joints but including hips and knees)

Severe night sweats (soak my clothing)

Constant lower back pain (tailbone actually)

Constant pain in pelvis

Always very cold (hands and feet always feel like ice; arms and legs covered in goose bumps)

Sharp and sudden pains in the lower right side of my back that gets worse with movement like bending (kidney area)

Constipation (SEVERE pain when having bowel movement- only have BM once every couple weeks)

Frequent urination (sometimes only results in drops)

Extremely dark urine that is the color of overly sweet ice tea and has a strong odor but no infection present and no pain when urinating (does not clear up when drinking nothing except clear fluids)

Loss of appetite and extreme fullness when I eat small amount (eat less than once a day and definitely a lot less than one full meal a day)

Muscle weakness (simple tasks like shaking the blankets to make the bed make me shaky and feel over exerted)

Irritable and sensitive (lack of patience)

Pale face

Heart racing and palpitations (recently had a very sharp pain shoot through my right breast that lasted about 20 seconds but took my breath away for a moment)

Balance is off (causing me to teeter when standing and walking)

Major case of the dropsies (almost like I don’t have the strength to carry and lift things)

Headaches (every day and usually over my right eye)

3 menstrual cycles in November 2014

They are saying I have either Endometriosis or cancer and that if I do it will most likely be pretty advanced, stage 3 or 4.

My mom died at 40 years old six months after having a hysterectomy,..she bleed everyday after. She was told she had cancer. I am a 36 year old mother of 3 kids;...anyway I have a severe history of clotting with no know cause except my my Factor 8 & 9 levels in my blood are elevated. The clotting started when I was 21 and I also had a P.E. (Pulmonary Embolism) so I can not take hormones and I am being told if I have to have surgery that hormones will become a new daily thing in my life.

I am afraid I am following my mom in this sense,...

I have a doctors appointment on Friday Nov. 5, 2014.

Any advice, suggestions or anything is greatly appreciated.

Margo J

[wizzleandmolly]

Im really sorry to hear all of your pain and not sure what to really say but hope you start to feel better real soon . Sending massive get better soon hugs XXX

[mj78 in reply to wizzleandmolly]

Thank you very much

[Mabes]

Hi Margo

On a side note - Have you had your thyroid checked? If you don't have cancer, your symptoms sound as if you could have more than one issue going on e.g. endometriosis and something else. There's a good forum on here called Thyroid UK - might be worth looking at.

I have the loss of appetite, feel full very quickly, extremely distended (never goes down unlike bloating), and nausea, and I was convinced it was an ovarian cyst causing it (as I had one again). Then the cyst burst. The distension and appetite issues remained, which really surprised me. When I had a laparoscopy recently they unexpectedly found a fibroid growing out of my womb. I was told it needs to be removed later. I'm still suffering the appetite and distension post excision of endometriosis so I'm assuming that those symptoms are either connected to the fibroid or something else (possibly gastroparesis as I have 2 other diseases that are risk factors for it). I was surprised to find out about the fibroid as I'd had an ultrasound a month before my op that showed nothing except my ovary was stuck to my pelvis.

In any case, I am able to drink liquids and I find pureed food seems to go down better than more solid/heavy stuff. So I've been trying to increase calories with things I can tolerate. Perhaps you can do similar if you can tolerate it?

Xx

[mj78 in reply to Mabes]

Actually I had hyperthyroidism for about 10 years and had radioactive iodine therapy to ''kill" my thyroid but it only lowered my thyroid function so i'm on levothyroxin 56 mcg daily. I recently had this checked and its normal.

This is definitely something more than that although I wish it wasn't. I will know more Friday or Monday latest once all test results come back.

Thank you for taking the time to reply to me. Please let me know what is going on with you.

Take care!

[KatieTattie]

I'm sorry to hear you are feeling so unwell. Thyroid is a good idea to get checked but from what you've said I'm thinking endo and anemia? Have you had any bloods done for anemia? You had a lap yet? X

[mj78 in reply to KatieTattie]

No I had my thyroid checked because I had issues with it that is the first thing I do. I was wondering about Anemia also,..endo scares me because of what it says online that and I dont really understand it. I am going to be getting a complete annual, an ultrasound and blood work on friday

[KatieTattie]

Oh and what about vit d?

[mj78 in reply to KatieTattie]

I will make sure the dr tests for Vit D and Anemia while I am there

[KatieTattie]

Anyway if you do have these issues just supplementing won't cure the problem if you have endo. It may reduce some symptoms for a while but I found that the iron sups and vit d was very hard on my system before I addressed the endo. When you have endo your body is so overwelmed that it seems like everything including food/ sups etc upset your system. X

[mj78 in reply to KatieTattie]

I am hoping to just finally get answers. I have been having these symptoms for a couple years...some of them are new and I just want to be healthy and have some 'life' i have no energy and my bf of years thinks I am lazy but it isn't that and he knows it. over the last four years i have lost weight had no energy, everything changed...

[Mabes]

Have you been tested for celiac disease or non-celiac gluten intolerance? It can affect nutrient absorption and many women with thyroid and/or endometriosis problems are unable to eat gluten.

The nutrients that need testing if you have a thyroid issue are iron/ferritin, vitamin D, and vitamin B12. If any of these are out, then it needs addressing as your body needs those nutrients for the thyroid meds to be able to be utilised properly. Selenium is also necessary but not usually tested (eating a couple of Brazil nuts a day should give you enough).

Unfortunately despite doctors telling us our thyroid levels are optimal, it doesn't actually mean they necessarily are. So long as they are in range they will say they are fine - one example: they frequently don't test for free T3, which means you could be taking T4 and not be converting well to T3 (the form the body uses) and they'd say everything was okay when it wasn't because they wouldn't been know as they hadn't tested for part of it.

Every time you get a thyroid test, ask for a copy of the results. If you go on thyroid UK you can post your results and more experienced members on there will advise whether they are optimised or not.

Adrenal issues are another area that might be worth looking at.

As they suspect cancer, a CT scan seems to sometimes turn up a clearer result than an ultrasound scan. So that might be worth asking for. If you suspect OVCA there's a helpful group on Inspire forum that you might find helpful. The doctors can do a blood test CA125, which can be raised in women with cancer, problem is it can also be raised in women with endometriosis and other gynae issues so it sometimes turns up false results.

Has anyone actually tested your hormones properly? Progesterone should be done on day 21 of menstrual cycle (docs often just do it on any old day) and the others on day 3 (I.e. FSH, LH, testosterone, estrogen).

I hope that once you've had your appointment you'll have a clearer idea of what course of action you'll be following.

Xx

[mj78 in reply to Mabes]

You have given me a lot of information. They have not tested my hormone levels at all. I can not take supplemental hormones because when I was 21 I was full of DVT's and then again when I was 26. I had a PE when I was 29 and my left leg was full of DVT's again earlier this year. I go to the hematologist at one of the best hospitals in the US for this issue. I have an endo doctor that deals only with thyroid and glandular issues at this same hospital.

I will mention what you have suggested to my doctor tomorrow. I took notes Thank you very much.

xoxo

[mj78 in reply to mj78]

I just got home from seeing Dr. Ellis.

The good news is he is very thorough and is going to be doing a lot of follow ups while everything is going on and we have a long-term plan started.

I had a urine test; results will be back in about 48 to 72 hours so next week on that, About 3 weeks for the pap results to come back; he said my cervix moves more than normal;

when he applied pressure to my left ovary there was no pain in the ovary and if felt normal; the right ovary hurt and i am still feeling a super sharp pain where he applied pressure there; he said (and I quote)

"your right ovary feels 'full' and enlarged which could be a sign of ovarian cancer or cysts. Lets try not to worry until you have had an internal ultrasound though."

He said he wants to do an Endo Ablation asap to help with the bleeding and he honestly said my best option would be surgery BUT he does not want to operate on me unless there is NO OTHER option because of my blood clot issues.

I am going to be getting a call to go in for an ultra sound of my pelvic area, my stomach and he also wants to get ultra sounds of my breast because the inner tissue in both breast in thinner on top than on the bottom and this concerns him.

I am severely impacted (which is an endo issue) and so he said I need to get that taken care of asap,...therapy to deal with the emotion aspect of everything,

I need to see my hematologist because of the old clots that are still there in my pelvic area and he said he may need to bring in another doctor to help him because he can not do this alone....so no real answers just more questions I guess but I feel like I am in good hands!