Sticky Blood-Hughes Syndrome Support

Could endometriosis and Hugh syndrome be connected?

I found out I had both endometriosis and APL after I had 3 early term miscarriages and I was wondering if anyone else has this combo and wether it could be related in anyway!

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Funny you should bring this up as I was reading some articles recently from another forum to the possible link with Endometriosis and Lupus. The bottom line is that there is a body of thought that this condition is autoimmune which I had heard but never before linked to my own situation. My first autoimmune condition was Hashimotos, or should I say diagnosed!! However that was actually dx just three years after I had had to under go emergency surgery for bleeding which turned out to be an enormous chocolate cyst on my leaf ovary and smaller ones on my right causing their almost total removal. I ended up with a total radical hysterectomy a few years later because of it despite the fact that my very experience gyny who had treated me for 12 years previously had no idea the chocolate cysts when he opened me up were going to be down to endometriosis!

Your question is therefore quite pertinent in that it would seem likely if Endometriosis is Autoimmune that my immune system was perhaps starting to erupt and I don't see that as a mere coincidence.

Here is an article you may find interesting that does also seem to link APS into endometriosis.

drdaiter.com/endo3.html

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ONG! My story is identical!

Prior to the 1st cyst I was admitted to hospital at least 6 times with suspected appendcitis only to be sent home days later untreated!

Endometriosis robbed me of my teenage years and after marrying at 20 interfered with our marriage until 14 years later everything was removed!!!

Autoimmunes are rampent in r family. I have sjogrens and lupus too. Dad has scleroderma my only sibling has RA. My son has Colitis. 😞

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Sorry to hear that! You do realise this thread is 5 years old!??

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I have both conditions!!! Endo diagnosed in 2010 and APL in 2011. I was operated of a chocolat cyst and they put me hormonal treatment. After less than 6 months I suffered my big brain thrombosis and I was diagnosed of APL. If they had done blood tests before hormone treatment I wouldnt have risked my life. My autoinmune disease doctor says both could be related. In my case, Endo causes me a lot of horrible pain that cannot be treated because I am on anticoagulants and hormones are forbidden in my case

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Swirl you may be surprised to know that I am on HRT called Estrodot patches. This s so I don't have to take it orally and it absorbed straight. This is taken with the full blessing of my Doctors including Prof Hughes who consider me safe as I am injecting Fragmin.

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Mmmm...interesting...I'm gonna investigate it!! I dont know if it is used in Spain.

Thank youuu

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Hi there, I hope you can take some hope from the feedback on here, as that sounds very uncomfortable. Mary F x

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Very interesting post...thanks.

I've been advised recently that they think I'm bleeding from somewhere into somewhere causing my iron levels to be low.

I was advised about 9 years ago that I had many cysts on my ovaries ....so wondering if this could be the problem ..... not sure, trying to make sense of it.

hope you are ok.

take care x

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Thanks everyone, this is the kindest forum I have ever read and it's nice to give and be supported by a community of people that understand that "chronic fatigue" is the understatement of the year!

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I'm glad u found us and we are able to support you 💋

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I'm so glad you got some answers. This is a wonderful community & they have got me through some tough times & answered many of my crazy questions.

Endometriosis seems to be very common with APL. I do not have endometrisis, however, both my mother & sister have it.

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My gyno told me edmomitriosis is from producing to much estrogen as well as fibriods, I have read being estrogen dominant can trigger lupus and cause flards in ms Nd as its all " inter related with aps I think it is most definately positive that it would cause problems with hughes. This makes sense jn my head anyways I hope you understand it lol

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It was my understanding the medical community doesn't know the cause of endometriosis but there are 3 main schools of thought...but I won't list them here because I can't remember all of them and don't want to look it up right now, too tired:) Anyhow, it makes sense that estrogen levels can have some influence but men have had endometriosis too. Not nearly as common but true according to research I read a few days ago which would make one rethink how much the hormone plays a role... Just thinking out-loud:-)

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Im not sure, im just going by what the gyno told me. Men also can be estrogen dominant tho however I didnt know they could get endomitriosis thats interesting. I know that feeling of bring tired as well as the constant googling of things. I nope you find the right answers and let me know =) sleep well and be well.

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I'm confused. Endrometriosis occurs when endrometriol tissue migrates from inside the womb and then in its new location it stil responds to the hormones of a females menstral cycle - therefore it thickens and sheds (bleeds - what happens when we have a period). The pain and chocolate cysts occur as a result of the blood not being able to escape.

Men have no womb, therefore no endometrial tissue, they have no cycle of hormones in response to preparing the body for pregnancy and therefore in my opinion it would be totally impossible for a male to have endometriosis.

I write this post to educate and not embarrass or belittle and I hope it is received in the spirit it is written. Please correct me if I'm wrong.

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When I reached the "age" my grandmother and her sisters explained to me that as a female descendant of our family line I was in for these horrible periods. Huge amounts of pain and bleeding, but the good news was that things would get better after I had my first child, so I should remember this as I started dating.

Well, for my seniors who were born @ 1900 that was the best option. I endured, and endured and refused to put myself on the marriage market ASAP. The Pill came along, but it did not help. Finally along came naprosyn and that was my "magic pill!"

Eventually I was diagnosed with fibroids, endometriosis, and then at age 27 I married and had my first child. And -- sure enough, after that first child everything was so much better. I sometimes didn't even need to take the naprosyn every month, though my life was much better when I did.

Since naprosyn is the NSAID which (I've read) counters some of the estrogens, this alll makes sense to me. And of course, pregnancy and delivery does change one's estrogen/prostoglandin and progesterone balances.

I don't know of course, the hard statistical corrolations, but again, from these posts it looks like there is an endometriosis/ALPLS common thread, probably tied together with an estrogen dominance imbalance.

Hopes this all helps!

And I still sometimes think as this or that great aunt spoke of how she married and had her first child out of desparation and had settled for a life without the education she had once aspired to, or a life with a husband who was somewht less then her ideal. Glad I didn't choose that route.

Gina

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All this sounds very familiar . . . I too had early miscarriages and was diagnosed with APS and around the same time it was discovered that I had endometriosis when I had my appendix removed. I am also oestrogen dominant and have chronic anaemia which I find difficult to control. My rheumy wants me to have the mirena coil but I am loathe to go down this route in case this causes psychological issues - I have enough neuro stuff to deal with as it is and I really don't need to add to it! I have been trying to control my horrendous periods with vitamins and herbs with some success - they are not as bad as they were anyway. I suggest reading Marilyn Glenville's Health Bible for Women if you are interested in a more natural approach. Oh, and I've recently been diagnosed with primary sjogrens too!

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I had the Mirena coil and it wasnt for me. My cycle became very unpredictable, difficult to manage in volume and i also had some laser treatment which worked for a couple of months and then back to problems again. Had my appendix out when i was pregnant with son no2 and historically have been very low in iron. As a resul, I used to find my periods so heavy that i was permanently exhausted.

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Funny you should bring this up but i was having lots of gynae symptoms and my GP thougjt i had Endo. Three laps, a hysterectomy and removal of right fallopian tube and ovary later and i am FINALLY pain free in that department. When the hysterectomy was suggested i opted to keep my ovaries as i was told at 38 i'd have to start on HRT and that would be considered too risky without long term anticoagulation. In the end, a cyst on the right ovary meant that came out in July of last year and of course now that i'm on the fragmin i am now greatly improved. Hope you get some answers!

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I am 36 and I know that I will eventually need a hysterectomy but I am not ready to do that just yet. At least you don't have pain anymore, that is something I look forward to!

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My first op for the left Oophorectomy and partial right was at 36 because of the chocolate cyst and other adhesions. They assumed that leaving enough on the right would allow my body to function but all it did was fluctuate and I had to have HRT. Then it would butt in and interfere with that so by the time I was 42 I was soooo ready to have a total Hysterectomy and it ended up being the best thing I ever did. Looking back although it would have been a shock at the time I wish they had done it at 36 given my standard of health for 6 years. I have never regretted doing it since.

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Ditto 💋

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I tried and tried for a second child and suffered terrible pain and discomfort. I even underwent a course of Zolodex injections into my tummy, to imitate a tempary menopause in an attempt to shock the endo into becoming dormant.

Another child didn't arrive for us and very reluctantly I agreed to a total hysterectomy removing all I had left.

It was major major surgery as everything was tied together with adhesions. After the recovery time was up I felt amazing it was the best decision I ever made and I 100% regret not having the op b4. I wasted years in agony unnecessarily.

I'd advise anyone suffering to get rid asap !!! 💋

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