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Adenomyosis

The unfortunate thing about adenomyosis is that you have no idea what I’m talking about unless you or someone close to you has or had it. I have found this out, quite painfully, through many tears and frustration in trying to explain.

I have always been healthy, in all ways – given birth to 6 large, healthy babies and the most recent – a set of fraternal twins who were 8 & 9 lbs. I have never had a problem during pregnancy – except the usual tiredness and some iron deficiency. With the twins I was huge and the pregnancy was just difficult because of that. No real problems ever.

My periods were always perfect from the day they started – 28 days on the nose and lasted 3-5 days, and every 6 weeks on the nose while nursing. The only thing I ever noticed was that after each birth my periods became shorter and heavier. This would flat out knock me down for about 24 hours and then I was off again with no problem.

The twins are a year old now, and after they were born things seemed pretty normal, but much heavier and now lasting a bit longer. They were born in January, so I didn’t have more than maybe 2-3 periods the whole time I was nursing and they stopped at 7 months. Right before they stopped I started taking the progestin only or mini pill and when they were done nursing I started taking Loestrin combo. Somewhere in there is when things started to get noticibly bad and I started getting a pain in my lower right side that would last 1 week on both ends of my cycle.

When I started the Loestrin I had breakthrough bleeding 2 weeks into it, which really surprised me because I had been on the pill before and had never had any problem -but this was 10 years ago, so I assumed I was just noticing more changes from having kids and didn’t think much of it except how long it lasted. Then I had it two weeks again and this time it came with a great deal of pain and lasted a full week again. So, I tell my doctor, pass it off as just getting used to the pill and I’ll continue taking it as I’m sure it’ll pass….

Well, as I’m sure you guessed – it didn’t. By November, my cycles were a complete mess, bleeding regularly every two weeks and the pain was increasing at lightning speed, and not going away when the bleeding stopped. I was to a point where I didn’t know what I was going to do and going to the doctor wasn’t getting anywhere. I was in constant pain by this point – so much that she sent me to the ER to have my appendix checked, had several blood tests, a sonogram, etc. There was so much pain in my lower right side that I couldn’t bear it and nothing made it slow down. She put me on pain medication, which was a blessing because I don’t know how else I would have survived. The feeling was like a huge, hot knife sticking through my lower abdomen into my back and on top of that I started getting what felt like 3rd stage labor pains. By December there was a spot of pain starting in my lower left side as well and the doctor wanted to do a laparoscopic surgery to see what was going on, but she was going to be away the next two weeks.

I decided I’d go to my chiropractor during this time and he found that my uterus was tipped back – and he fixed that – I felt a ton better quite suddenly… but, only for a few days – long enough to get me through Christmas.

January first – it all started right up again and wasn’t letting up. A couple weeks later I went in for the surgery and she found a cyst on my right ovary that was seeping, she did a D & C, and burned off some spots that were on the outside of my uterus – a large spot on the right and a smaller spot on the left. She said my uterus was slightly enlarged and bulky, but everything looked pretty good and she noted that I was ovulating. I was so relieved! I immediately felt better when I woke up, the pain was gone! I was so excited and followed all instructions perfectly when I came home. For about 2 weeks I was pain free except a little from the surgery itself. Then I got my period – the whole thing in 6 hours, felt like someone turned on a faucet and I couldn’t do anything. The next day, there was a bit of spotting, no big deal… but, the pain returned and with a vengeance.

It just kept getting worse and worse, I had nothing for pain except Excedrin, which I took, but my husband knew better – and knew that wouldn’t do it. So, he took me to the ER the Sunday before Valentine’s and they did all the same things – CT scan, IV, pain meds… gave me some kind of morphine derivative that made me feel like I was being sucked through a straw at 60 mph… blah… that was terrible.

I went back to the doctor a day or two later and she said to try another pill, this time Seasonique – 4 periods a year – sounds like bliss! She said if that doesn’t work to come back and she’ll put me on Lupron, and then if that doesn’t work a hysterectomy will be the last resort.

So, I went back to the chiropractor. I told him all of what’s going on and he gave me vitamins & fixed my uterus again, which I’m assuming fell back again during/after the surgery. I went back a few days later and he said everything is structurally stable – so he checked my iodine level, thyroid and my iodine level was very low, but thyroid is good. So, I’m taking my vitamins, iodine and started the birth control pill – everything is going good. Well, for these couple weeks there was no physical interaction with my husband and I, everything was looking good, so we decided to give it a try.

And boom – there it started again – all the pain and bleeding my body can dish out, and it’s way more than I can take. Labor from childbirth is extremely painful – but there’s an end to it – a beautiful, sweet happy ending that smiles and coos at you.

Me – I’m tough, I’m strong – when I was 10 years old I could carry an 8 inch cement block in each hand, carried a full-grown goose under each arm over a half mile home, I’ve built walls, did landscaping for 12 years and was as tough as any guy on the job, (with the exception of my husband-which is why I married him…lol) I’ve birthed an over 10lb baby with ease, picked up and carried my deer, moved a 400lb wood stove with my husband – I am fit & strong… but, it’s all meaningless…

Adenomyosis – there is no end – it’s just pain, more than I can take and more than I’ve ever experienced before.

Why am I writing? Well, in one way, I’m writing to put this out there to let anyone know who has this condition that you are not alone – even though I know you feel like it.   And maybe, just maybe, I can be some help to you.  Few doctors know much of anything about this condition – except adenomyosis = hysterectomy.

I don’t want to believe that. I have a lot of people tell me – well, you have 6 healthy kids – maybe just have it out and be done. I’m not ready for that – it doesn’t matter if I’m “done” having kids or not, it’s not a matter of losing my “womanhood” either. My plans for children were always this – I have no plans. I have taken birth control since the twins – but, I also know that it doesn’t matter – if I’m supposed to have more kids – I’ll have more kids, whether on birth control or not. I look at it more as mind-easing for me – I’ve done my part, but if it’s meant to be – it’ll be. I feel the same way about a hysterectomy at this point – if I take it out, then I’m not letting things be. I don’t know how to explain that – I’d just rather go with the flow, and be able to do so. ?

So, in my studying of this miserable condition – and my knowledge of herbs, I’ve been trying to find something that will help. Obviously birth control pills are not the answer, and Lupron looks pretty nasty too – I’m not going to be taking that. Too many side-effects for me.

I have found one herb that looks promising – it’s really a seaweed and I’ve found only one study on it regarding women’s cycles. It seems to have a positive effect on “estrogen-dependent diseases” which, adenomyosis is, along with endometriosis and many of the cancers of the same area.

Bladderwrack – Fucus vesiculous – study on menstrual cycles

It has been found to balance the progesterone/estrogen ratio to where it should be – which would, in theory, actually cure adenomyosis, endometriosis, etc, without resorting to hysterectomy.

So, I figured it was worth a shot and if I can handle taking it a few weeks and see what it does, we’ll see. I bought a pound of bladderwrack, and I stopped taking the birth control because it would make sense to me that they would counteract one another. I started it on the 11th – first a teaspoon in tea for a couple days – and still taking all my vitamins. I mix it with plantain, gunpowder green tea, red raspberry, rose hips and dandelion. The only other thing I’d add is peppermint – because it seriously helps with the bloating, but I’m out at the moment.

I have looked at all the popular herbs – don quai/angelica, black cohosh, cramp bark, vitex/chaste berry, etc.  A lot of them seem to be more helpful with menopause and some with PMS.  What I’m going to do is gradually add one herb at a time and try it – like cramp bark will most likely be first, then maybe I’ll try maca or damaina and possibly black cohosh – but this has to be done carefully to get a good balance and I’m very anxious to see what the bladderwrack can do by itself.

Yesterday and today I added it to a salad for dinner, and I even mixed some with a yogurt earlier today – which wasn’t as bad as it sounds. I’ve been taking 1tsp a day, today I took two – consumed though, none in tea.

The first day that I took the bladderwrack in the tea – I immediately felt things pulsating and the pain slowed, so that right there gave me hope. At this point, I’m still taking it, but am in a great deal of pain on and off throughout the day, and I’m still getting over a great deal of heavy bleeding, so it may take a few days before I see anything worth posting, but I will.

I do have it set in my mind that if this doesn’t show some positive results within a couple weeks that I’m going to get the partial hysterectomy – because I do know that, regardless of trying to hang onto something – I have my life ahead of me and my children need me healthy and active. My point is that I would like to exhaust all options first, as my doctor had noted. I don’t want to be 4 years down the road wishing I could have another baby and regretting not trying to take care of it in the ways that I know how. And at the same time – I may get this taken care of, and not have any more children. I guess I’m really just bad at making decisions like this and figure it’s up to someone who’s much better at it than I am. 🙂

So, here’s to trying to do things different  and we’ll see if it works… 🙂

2 Responses to Adenomyosis

  • Eve says:

    Hi, I was just diagnosed with this. Did you get any relief from using the bladderwrack?

    • HSMom
      HSMom says:

      Yes, a good bit, but the thing that helped me the most with the pain was don quai. I did end up having a partial hysterectomy, but then was additionally diagnosed with PCOS afterwards, which is all related. I still had major pain in my ovaries. Then I started Progestelle from http://www.womhoo.com, (you can’t take with don quai), but after detoxing of xenoestrogens and about a year of Progestelle, daily exercise, and adding Kelp, Bladderwrack, Maca, and Magnesium supplements it’s been a major improvement. It really takes time to get your body back on track after being in such bad shape for so long. And of course, depending on your situation, pregnancy is also very helpful because of the progesterone. Also, avoid stress as much as possible.