So, my family history is as followed! My grandmothers unaided had:- fathers mother had 13 children. Mothers mother had 3.
My mother had 7 children, over a span of around 20 years.
I’m one of a set of identical twins! My twin sister has had 6 pregnancies.
I have 2 half sisters. One had 1 child but multiple pregnancies. The other had 3 kids without trying.
My other full sister had 4 kids and multiple pregnancies.
My aunties also had no fertility issues and multiple kids.
My nieces have all gone on to have children easy.
My cousins had multiple pregnancies.
I however, for some unknown reason got the worst stage/type and position Endometriosis. I have had one pregnancy that ended in late miscarriage and despite not using contraception since then, never got pregnant again in 20 years.
My family history isn’t even suggestive of fertility issues/disease, yet somehow I have this stupid disease! Anyone else similar?
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Heloo85
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One of my sisters had emergency surgery for an ovarian cyst that had caused a torsion, but that was dermoid! No endometriosis. My mother did have to have an earlish hysterectomy, but that was from weakness the pregnancies, especially us twins caused. No endometriosis. So I know for a fact at least 2 was completely clear. None of the others had any symptoms or problems as far as I know. Only me signed off as disabled for having one of the worst cases of endometriosis on planet! Which I find completely bizarre! I never even knew I had Endo, because none of my symptoms, from the day they started were cyclic! I just had severe daily pain up until I was 31 when I was diagnosed!
It’ll be interesting if you do, too!.. They say it’s hereditary but my family history doesn’t suggest that, in the slightest!
I hope you get your diagnosis and relief as soon as possible! Xx
Ahh really! I know my aunty had a hysterectomy due to prolapse!
Bless u 😔 although we wouldn't wish it on anyone it just seems so unfair to be targeted with all this crap.
I have always suffered with bad back & random cysts on my ovaries for as long as i can remember. But now i have alsorts of pains thats flared just by a simple walk.
That’s what I would say was my main symptom, a bad back! I’d wake up every morning in agony! After my first lap, and after suffering for years, that kinda went! But then, after I had supposedly healed from my first lap and I went back into employment, my back pain become leg pain, which has stuck with me now for 6 years!
Well to be fair I’ve only recently just found out I have one of the worst cases of Endo on planet. I had my first lap 6 years ago and nothing much was said other than I wouldn’t be rushed into surgery again! And then for 5 years I remained on 3 monthly consultations, having an ultrasound a year, and put on Zoladex then combined pill! I was told my symptoms that restarted 2 weeks post op, that got so severe I was outpaced by pensioners with Zimmers, was obviously IBS and Fibromyalgia! Up until I almost died from complications! Then it was ‘ok, you can have your surgery!’.. I need 3 surgeons and now awaiting for major, major surgery, which I’ve been told is going to take years to organise 🤣!
I do hope you have mild disease, and don’t end up like me! You get a quick diagnosis and sorted out fast!.. And not fobbed off for what is now 21 years of pure hell 🤣
The thing is, there’s very little information out there about this disease! It all seems to spout the same rubbish! That it’s just a benign disease, that causes painful periods, and well there’s 4 stages, yes, and various types of disease, but no break downs of what each disease at each stage is capable of!
To this day I still don’t have typical Endometriosis symptoms, never have, likely never will! I laughed at the nurse at my diagnostic lap when she suggested I had Endometriosis! I was opened and shut in 5 mins my disease was that advanced!.. Didn’t even stick around for photos!
The nurse on the phone said to me “it’s just pain!”… Hmm, sepsis ain’t just pain!
My first lap was major surgery and incomplete! My second lap, 6 years later is going to be major, major surgery! Hmm, if it’s just pain, how come my surgery grade has increased with time. 🤨
I’d say anyone with chronic pelvic pain, which is pelvic, so at the front, or back, or leg pain, regardless of when it happens, should be scanned for Endo! Don’t believe the list of symptoms, they extend far beyond what we are told! Xx
Exactly, we're all so different. Sad how many health workers palm us off & even makethe ignorance well known! As if we're not battling enough without belittling words like " it's just pain"
If only we could transport our pain on to them for just afew minuites 😏
Totally agree, if it's chronic & taking it's toll then action should be taken xx
Forget a few minutes, the way I’ve been fobbed off for years, I’d like to see them handle this for a year! In fact, that nurse who said it is ‘just pain’ can have it full stop! Like to see her handle this ‘just pain’ 🤣 xx
Well i had my laparoscopy & i have Adenomyosis. My specialst told me to basically forget my diagnosis & just get on with it! Apparently i shouldn't have pain everyday as Adenomyosis only affects periods. Awful how we are just dismissed xx
Yes I’ve not been blessed either! I have severe Endo, lost half my cervix to CIN 3 and had a big chunk of my vulvar removed for VIN 3! Had god knows how many PID episodes (non-STI), one of which nearly wiped me out! I definitely wasn’t blessed in the last department! I almost wish I was a bloke, then maybe my life would be simpler 🤣.
It’s weird, cuz the research I’ve seen said it’s either hereditary or environmental! Well, I come from a high fertility family, and I’ve shared the same environment as them!
We do have a lot of aggressive cancers in my family! And I have aggressive Endo! I’m wondering if those genes are expressing themselves as a benign disease and not a malignant one(?).
To be fair, I’ve just googled that, and it’s true, cancer genes do express themselves as non malignant diseases 🤣. Maybe my theory was correct.
The thing is, disease usually clusters in family. Hence why a dr will ask you about your family history. The reason I am asking about people in a similar position with a similar background to me, is because my theory is this….
You can track disease when it clusters… When it clusters it becomes a pattern. For example, if your mother had stage 2, superficial Endo, you too would expect everyone else, unless immuno-compromised to have the same disease pattern. It would then become what Drs class as ‘typical’. There’s a pattern you can clearly see.
But if you have no family history, then the first ever appearance of the disease would be much more severe, because simply, your immune system wouldn’t know how to handle it! Then over generations a disease would become less severe as overtime through generations the immune system will hold it back, better! So you’ll pass on the genes, and the functioning immune system that can deal with it….. it’s just a theory! But I assume those that don’t have the disease clustering in their family, will get a severer presentation xx
Early menopause runs in my family as my mum went through it as well as her mum early on 🥵🔥I wonder how I ended up with endo/adeno when no link in my family, like you said I do have a severe case, never felt so much pain in my life x
In my family I’m the first generation born in the U.K. My mum had awful periods growing up, but grew up in a developing country, where very little was known about menstrual health. When she came to the U.K. the doctors found that she had fibroids, and had surgery for it. She had no formal diagnosis of endometriosis, but not sure if they even checked for this?
I was diagnosed with severe grade 4 endo last year.
It’d be interesting to know if there’s a link between fibroids and endometriosis! 😯
It is absolately hereditary. All the scientific studies show that.My mum had no problems with her fertility but my aunt didn't have children she had a hysterectomy at 28 and didn't really understand why. But I think you are mixing up two different things lots of people have endo and are able to have children endo does not automatically mean infertility. I have stage 4 really horrible endo but the doctors said the reason I can't have children is just my age I left it too late and my eggs are no use now.
My tubes and the bits I need for babies were fine until the disease got very advanced. I only got like this in my late 40s. I think the only thing you can do is warn your nieces to get checked for endo early and to try for children early before the disease gets a strong grip.
My gran had 13 chidren but I think she started when she was 17 the age you strat having children makes a big difference. The illness can come via the male line so you need to look for problems on both sides not just the maternal one.
Some scientists think endo is caused by having too many periods. If we were pregnant every year form the start of having sex as many of our ancestors would have been we would have far fewer periods which would equal far less bleeding and scarring.
I also think ,although there is no scientific evidence at all for this, that the pill must make a difference. Endo is partly caused by (not completely there are lots of different theories too ) producing too much oestrogen. So my "theory" is if a woman is already producing too much eostrogen naturally and then they are put on a pill for ten years which adds far more oestrogen on top of our natural oestrogen that is going to make the risk higher. But as far as I know no research has been done into this.
There is also a large amount of oestrogen given to cattle nowadays to make them make more milk. Apparently cattle are given really large amounts of female hormones and they come through into the milk and these amounts are high enough to cause hormones to spike when you drink milk that is not organic. My specailist told me not to drink milk unless it was organic.
Noone knows a hundred percent what the cause of endo is there seem to be several diffent theories but eostrogen plays a big part and I think some of these other possibilities need to be investigated. But all the science suggests it is hereditary but that doesn't mean everyone who has endo will be infertile. I'm sure there are lots of people on this site who have had children but who also have endo. We just drew the short straw.
For it to be hereditary it has to start somewhere!.. And actually, my theory on cancer genes showing as a predominantly a benign disease is actually backed by science!.. And that’s exactly what I do have on my dads side of the family.Interesting you say it can be passed from either side! My aunties/cousins on either side, didn’t have gynea problems! You say endometriosis doesn’t effect pregnancy! It did with me, full stop! Never used contraception for nigh on 20 years, after my late miscarriage, never got pregnant!
You had late disease, it would appear your auntie did! Typical disease!
I’d never suggest someone who had no problems or symptoms to go for surgery! The risks far outweigh the benefits!
But, no, none of my family have/had fertility or period issues or gyne problems!
If for whatever genetic make up allowed a disease to advance, it would effect fertility! Endometriosis effects fertility full stop! Even if it just takes you longer to get pregnant, or miscarriages, likely higher birthing problems too! It’s a disease of fertility! Might not stop some people having kids, but it’ll make the whole thing more difficult than someone who doesn’t have it!
Ps Pregnancy isn’t a cure for endometriosis. It can suppress symptoms in some people! When we talk about fertility, we talk about everything from getting pregnant in the first place, to maintaining pregnancy, to giving birth without complications! That’s a fertile woman!
There is obviously more to Endo than periods! Damn, been in many medical menopause’s with active disease still on scans!
I don’t believe in the retrograde story! Its a load of bull! If the disease had anything to do with physical bleeding, men wouldn’t get it, but they do! Rarely, but it is noted! Plus, the cells are ‘like’ that of what is found in a woman’s uterus! Like, not is!
Some people, those that do respond to progesterone, will likely find relief! The last time I tried progesterone I was hospitalised.
I also don’t believe Endo is a single disease, either! It’s likely more than one!
We have a whole family of women with gynae issues across several generations. Some worse some better. Genes aren’t the only things though it’s also what we encounter environmentally.
Just out of interest - August last year it seems they’ve identified at least one of the genetic pathways related to Endo. NPSR1-/NPS pathway. It’s associated with other issues Thyriod, salivary glands, lungs . It’s commonly associated with Asthma( MAST cell issues) Eczema, heart problems requiring beta blockers for treatment, IBS ( the mucosa lining) ,colorectal cancers, anxiety, addiction , bi-polar and glaucoma to name but a few. So it maybe that actually family members may express their pathway problem another way.
It’s certainly focussed my attention on how I want to approach self care. Hope it helps the understanding long term.
Endometriosis may have a genetic susceptibility. That is to say, you many have certain genes and are therefore prone to endometriosis and these genes are inheritable. However, even with genetic susceptibility, it does not mean that this disease will definitely occur in your descendants. It is just easier for them to get the disease. The incidence of this disease is affected by many other factors. Therefore, most scholars still hold the opinion that endometriosis is not hereditary. Women can nourish their bodies by taking herbal medicine. Fu Yan Pill is a good choice. This medicine is made of pure plants, which can effectively relieve the pain caused by endometriosis.
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