Sometimes confused, sometimes crazy

[Mparstoy]

In this I am not alone, it is what I read from your posts, sometimes the feeling is of impotence, sometimes confusion and sometimes I feel bat crazy. I live in Ecuador, there is no such thing as an Endo specialist here. I have been suspected of having Adeno and Endo, and also told that I don't. You know the drill...

So I have some questions, maybe some of you have gone through similar experiences. I was having periods with blood clots the size of mandarines and heavy periods that seem to be the cause of cronic anemia. After many alternative treatments, the blood clots are not big aliens, but small aliens and I don't bleed like a battle field. The cramps had gotten to the point that I had labor pains, they are better now. That is the good news. The bad news is the pain in my back now extends across my hips, down my buttocks, down my thighs, through my knees and to my toes. The pain last month continued during the entire month and now this cycle has intensified.

Have you experienced something similar, where some symptoms improve and new ones surface?

I have started to feel a tingle like pain, nothing intense in my shoulder blade and down my arm, anyone relate?

Have you been operated because you have Endo affecting your sciatic nerve?

If so, I would love to hear about your experience and ask some more questions.

Thank you!

[sarahsarah123]

Hey, sorry for what you're going through. Just wanted to say I understand!! Sounds to me like adenomyosis- maybe also endo. I have similar symptoms, had a laparoscopy and was told there was "very minimal" endo, so I think adenomyosis is causing many of my issues. However I was interested in your post because I also get this weird tingling pain down the front of my arms- it's similar to the pain I get down the front of my thighs for the adenomyosis. At first i read that any arm pain could be endo on the diaphragm, but apparently mine was checked during my laparoscopy, and given there wasn’t much anywhere else either my consultant said it was unlikely.

Sorry I can’t be more help, but just to let you know you aren’t alone! Also, I was curious- what kind of natural treatments have you tried that have helped you so far?

[Mparstoy in reply to sarahsarah123]

Hello! Thank you for replying! It was very interesting to read your impression about Endo vs Adeno. Have you seen or been told that there is a difference in the symptoms? I would love to hear more about your story. What made you decide to do a Lap? If you were having pain radiate down your leg, were they concerned that it was affecting your nerve?

I had read about the tingling in the arm related to the diaphragm, has it gotten worse?

How long ago did you get your surgery?

Sorry for all the questions. I am very curious and I am also sorry for all you have gone through.

As for all that I have done, the is so much that I don't know what has helped: bio magnetism, family constellation, energetic work with female shaman, Holotropic breathing, integral coaching, coaching with horses, Primal Dance, Epson salt baths, castor oil massage, Vitex, Indiba Hipertemia, Ayahuascar, Toque Zen.....

Of all of these, the more conventional ones and easy to do are the Epson salts and castor oil, have you tried these?

Thank you for your time! . With kindness, Margarita

[Mparstoy in reply to Mparstoy]

Oh and Vitex is easy to find and take as well!

[AllthatGlitters in reply to Mparstoy]

Endo v adeno the consultant told me they are both very similar symptom wise.

[sarahsarah123 in reply to Mparstoy]

Wow, you have tried so many things! Thanks for the information, glad it has helped at least partly.

From my reading and talking to people with adeno only or endo only (although they obviously frequently occur together- i read somewhere up to 50% of people with endo will also have adeno- Drs have just been bad at diagnosing adeno so far). It seems that uterine symptoms are hallmarks of adeno specifically- so, large clots being the most obvious but also very heavy periods, bleeding between periods and/or during/after sex, as well as pain that feels like contractions specifically and pain that radiates down the front of your thighs- although some of those those *could* also happen with endo. For endo specifically, symptoms can be bleeding from unusual places e.g. the urethra or anus, also stabbing pains in places other than the uterus (which sits surprisingly low down in your pelvis), but none of those are necessary for an endo diagnosis of course.

I had a lap in september because I had no idea what was going on in there and wanted a diagnosis at least! I was told they only found very minimal endo and was then dismissed- but I think I might have deep endo at the top of my left leg/groin that they missed, because that pain is still there. I am very concerned it is affecting my nerves, as I have typical nerve pain in my left leg that is cyclical so... hallmark endo. The arm pain has gone for now because I am currently taking Visanne (progesterone), but i am terrified it will come back once I stop taking it and my periods come back

[Mparstoy in reply to sarahsarah123]

Thank you for your detailed response! It must be frustrating to have gone through the procedure and still not have the clarity of what is going on. When they went in, I presume that they also checked near your nerve.

Do you have symptoms that come and go out are they constant? I think this is what confuses me the most and makes me question whether it is Endo or Adeno, I have not been bleeding profusely and the blood clots are normal. Is this possible? Could the Endo have moved and just not affect me the same way?

I am getting two exams done on Saturday, we shall see if anything comes of them.

As for the treatments I have tried, have you attempted any of these?

Lots of love and thank you again!

[sarahsarah123 in reply to Mparstoy]

My symptoms come and go since being on hormones so it's difficult to tell without having periods what is endo and what isn't. But the leg issues started before the hormones, so I'm sure those are endo. They did check my nerves and apparently didn't see anything, but it feels deeper than they can see during a lap I think. I also had pelvic pain throughout my cycle before the hormones, which i assume is the adeno. I definitely think from what you describe you should consider adeno, particularly pain outside of menses which is a classic symptom. But beware it doesn't always show on scans, particularly if the treatments are helping!

I tried castor oil packs which are nice, not sure if they worked. I also went a bit crazy with supplements when I first got my diagnosis (I literally was taking 20+ pills a day) but then got scared about drug interactions particularly with the synthetic hormones I'm now on so I stopped those, haha. I didn't try vitex though, I definitely will if i ever come off my synthetic hormones!

Good luck with your exams- be persistent and I hope you get some answers

[Mparstoy in reply to sarahsarah123]

Thank you!

I have not gone the hormone route for many reasons, one of them being that we are trying to conceive with my husband. We've had 2 miscarriages and not gotten pregnant in 3 years. Luckily we have not been stressed about getting pregnant, yet it has also been a good excuse not to go on hormones.

We'll see what are next steps are.

Much love for you!

Margarita

[AllthatGlitters]

Hi Mparstoy

Welcome and hope you get the answers that you are looking for on here.

I have Adenomyosis which was diagnosed via an MRI scan, it didn’t show up on an ultrasound scan.

I have chronic anaemia which I struggle with as I can never seem to get it to a level which is normal, it also makes me feel very tired a lot of the time. Do you take iron tablets?

Like you I also have labour pains and it can happen when I least expect it and always before I start to bleed, I am on the floor with them and often on morphine. Codeine does nothing for the pain. It’s the worst pain I have ever experienced and the doctor said it’s just like labour as the blood is contracting through the body and is unable to escape.

Another symptom for me is heavy bleeding which can last 2 weeks or 3 days, no pattern to it and I can start to bleed for a few days then it stops, then it comes back a short while after. It’s hard to manage and I have often had big clots where I have stood up, blood gushes through my pants, sanitary pad and jeans and I am then in a panic to get myself changed and it’s no way to live as I have had this happen in public before.

I had a laparoscopy which didn’t show up Endometriosis, so the above pain is due to Adenomyosis.

Sex can be painful, I suffer with hot flushes at times, my belly bloats prior and during bleeding too.

Hope the above helps.

Feel free to PM if you need a chat

Love Kate x

[Mparstoy in reply to AllthatGlitters]

Dear Kate, thank you for your reply!!! I am so sorry to hear what you are going through! Have you tried other treatments?

What I have been reading from you and Sarah is very helpful. Would you say doing the Lap is advisable? If I were to do it, I would need to travel to another country and that obviously entails a lot of money, since my insurance would not cover the trip. I think there is also the fear behind doing all this and a doctor saying nope, nothing there, it's all in your head.

I keep proposing that I see what happens next month. And I think that just confuses me even more.

Thank you for your time and support.

Much love!

[Mparstoy in reply to Mparstoy]

Forgot to answer your question, I made some drastic changes to my diet and was taking iron supplements for about a year. I think the anemia is under control so I have not been taking them. But in understand completely the feeling of every month trying to build up and every month it depleting again. Reminded me of trying to build a sand castle and then the ocean wave would wipe it out and I'd kept trying to start again.

[AllthatGlitters in reply to Mparstoy]

Hi that’s okay, glad you are getting support from us lovely ladies on this site. I would have been lost without it.

It seems that women don’t talk about gynae problems, not where I come from anyway and it can feel quite isolating at times too.

I got a laparoscopy as my gynae said I really need one to diagnose Endometriosis or not in my case and to also see if there was anything else happening down below.

I ended up paying for private hospital treatment due to the fact of very long waiting lists, I am in Scotland and it seems all parts of the country are different in relation to waiting times.

It’s personal choice if you go through with having a laparoscopy, is there no way in your county of having this fine without you having to pay for it? As lots of people couldn’t afford to go this route either. It’s unfair isn’t it.

Sending you a hug xx