I am aware on here that many people have experienced problems for many years, since puberty.
I have what is suspected to be Endometriosis, but I haven't had any problems until the past 2 and a half years. Is this unusual?
I know it takes a long time to get a correct diagnosis. I am waiting for a Hysterectomy so hopefully I will find out what is going on inside. I am aged 40 now
Thanks in advance.
Hi, did you have problems when you were young and then they went away and have now come back in peri menopause, as that was me? The specialist told me that endometriosis in a lot of women tends to become inactive (his words) meaning it's there but it's not causing constant pain. Then something triggers it; in my case peri-menopause. I've read that this happens to a lot of women with this condition. I didn't even know I had it until they tried to do the hysterectomy and found stage 4 endometriosis has fused my cervix, bowel and left ovary together. I don't get much pain except odd stabbing pains which are so extreme they send me to my knees; these aren't constant but they take my breath away. Think about what your periods were like as a teen and young woman. Did you have the same experience as everyone else? If not, then you possibly had endo but just didn't know. You possibly normalised it once you realised doctors wouldn't take you seriously. Anyway, good luck. I hope they are investigating other things too like fibroids and adenomyosis. Let us know how you get on x
Thankyou Sunset Lady,
Yes, it's odd because my periods were reasonably normal, started age 14, then I was on the mini pill (Desogestrel) for 20+ years . . .no bleeding, no problems at all
You mentioned that they tried to do the hysterectomy but found everything fused together. Were they able to do the surgery or did you have to have more than one operation? I have an instinctive feeling that something is happening inside my body like that, I wouldn't be surprised with the pain and symptoms I have been having.
Thanks x
They won't touch it as my bowel has pulled my rectum so high so it's completely adhered to my cervix. I think if I was much younger they might but all I hear from all these men is "you need to go through menopause" which annoys me as, yeah I'd like that too but my body is just not interested. I do know that estrogen is fuelling my issues but if I cut down on the gel I'm a mess. I cry and cry and feel paranoid. Some women are just so sensitive to estrogen. I'm on provera continuous regime and I've put on 15 pounds in 2 months but I've FINALLY stopped bleeding so I'm not bothered about the weight as I can exercise again. My breasts are huge and so sore but the bleeding was making me anaemic so I'll take anything other than that. I love all the comments on here. These women are bloody incredible.
Is it a specialist endo centre that won't operate?
Yes. I went private and got the head of the endo clinic in the North East. He's very good and very honest. I've had an MRI and I'm waiting on results but the photos from my abandoned hysterectomy are clear that it would be very complex surgery. I don't want to live with a stoma bag, and if they can stop the hemorrhaging then I can live with the pain. It's the blood loss that's the main issue. I had iron transfusions and I literally can't leave the house when it's bad. They want to put me on zoladex after Christmas which is chemical menopause, but I'm really worried about the side effects. For some, it's life changing whilst others describe it as pure poison.
I only started with symptoms at about 41. I’m 44 now and I’ve been diagnosed with Stage 4 Endo. Since some people have it and never have symptoms I just assume during earlier stages the pain didn’t really bother me. Thinking back there have been times where I had IBS, and went to the doctor with heavy periods as a teenager and was dismissed.
Hello Rosie,
I am sorry that you suffered but were dismissed . . .there seems to be a theme here! It is frustrating that diagnosis takes so long.
Thanks for your comment x
I’m exactly like you: no symptoms whatsoever until I turned 38 when I started experiencing excruciating pain before bowel movements during my period. My symptoms were so unusual it took a while to realise it was endo but finally got a diagnosis through an MRI at endo clinic. I fell pregnant while waiting for my results and am currently still breastfeeding so no return of period yet. I’m petrified about it so trying to feed for as long as possible… I’m now 40
Hello Trinity,
I'm sorry to hear that. It is very frustrating having these symptoms. It is interesting that you didn't have any trouble until about the same age as me. I hope things get better for you now as a new Mum x
So sorry you’re all going through this, but good to find similar stories…
44, my official endo journey started about a year ago when I couldn’t stand up straight because of the pain in my side. This can come on so quickly now and then leaving me fatigued for days. Still waiting on Lap to diagnose/manage, scans so far suggest adhesions, and your description of crippling pain that takes your breath away is very familiar.
I had painful and changeable IBS symptoms for years which plagued my 20s and 30s. I thought the ‘ass lightning’ before/during my periods was normal. Had challenges staying preg, during preg and post birth. I recall living at my dad’s after uni and making him wait for my cramps to finish before I could finish speaking. He told me then it wasn’t normal and i insisted it was just part of being a girl. It’s crazy how long I normalised the signs that seem so clear in retrospect.
Hello JEWM
Yes, everyone here is able to relate and understand about the pain. It is so extreme and I don't like to go on and on about it to my partner or family, but I can see that people here have had similar experiences.
It is not funny at all, but I nearly passed out with pain recently going to the loo! It is unbelievable!
Thanks for your comment x
Sounds like the symptoms were misdiagnosed as IBS. Apparently commonly misplaced as the issue. Endometriosis sufferers often have a high capacity to minimise/normalise discomfort according to research as well as a very few who are asymptomatic.
Perimenopause with its ups and downs can really fuel endometriosis with its surges of hormones both exposing and leaving us more vulnerable. There are many different types of endo - they haven’t got to the bottom of them all either. Some are more painful, some faster developing and also depends on the individual. Lack of Omega 3 or over use of Omega 6&9 , deficiency in antioxidants, Vit D , B6& B12 and infections like klebiesella, deficiency in protein ( those with endo require greater levels of nutrients especially protein!) . Frequent use of antibiotics, stress and fast foods increases the vulnerability of the gut too . All of this can combine with the change of hormones to add rocket fuel to an underlying condition.
Good points Blooming Marvellous
The only other thing that might have caused my issues is that I had chronic anorexia nervosa between the ages of 18 and about 32. So it is relatively recent that I have only been able to maintain a healthy body weight . . .maybe I have caused some kind of damage to my body? Or perhaps more likely I have triggered normal hormone levels/periods but my body has gone a bit over the top? That might explain the recent changes.
I have found it really difficult to deal with some of the side effects from taking hormone medication like Norethisterone and Provera because I have had some weight gain/fluid retention but I try to tell myself not to panic and that it won't be forever. I am keen to have my hysterectomy operation and see what is going on inside!
Thanks for your support x
Hormone regulation can be a bit of an issue. Getting yourself out of that food disorderly world is a toughie so admire you for that. Endometriosis and anorexia are more frequent bedfellows than the general cohort of women and actually whilst there are all kinds of reasons that lead to that place , actually there is a pattern of higher requirements for additional Omega 3 from the get go genetically ( and not the only thing but it’s significant) . This covers other things like OCD, depression, schizophrenia, heart problems, endometriosis, and a bunch of other stuff. ( I think rooting around in the brain space it’s NSPR1 gene , but couldn’t swear it !) Omega 3 is pretty interesting both as an anti inflammatory but also as a healer of the fragile gut . Hormone related contraception creates greater need for certain nutrients but some view as a “semi menopause “ in the body. We need our hormones in balance to feel well and help us managing inflammation overall. It’s somewhat chicken and egg.
For some women more progesterone isn’t helpful as it simply creates more imbalance with the body overdriving to maintain a balance by producing more of everything else. There are those who feel it can drive endo growth too . Progestin has a different action than bio identical progesterones and doesn’t suit everyone! The side effects can be huge and some women can become mega depressed. Seems again that a higher percentage of women with endo have either progesterone intolerance ( feel like shit on it ) and you might see PMDD or certain emotional distress in last half of the cycle. For these individuals progesterone doesn’t calm or soothe as normally thought but actually creates anxieties etc. Other women struggle instead with progesterone resistance - bit like insulin resistance. So standard suppression via progesterone is t so effective as expected. ( Hold my hand up here ).
Omega 3 , Zinc Magnesium, B6& B12 as well as Vit D3 are essential in good quantities ontop of the antioxidants. Poor nutrition because we have a natural higher need seems to be a factor in setting up the inflammatory conditions and vulnerability to autoimmune issues and infections. All of these have a part to play with endo development- it’s not simply driven by oestrogen as many parrot. The oestrogen more like parafin chucked onto a fire rather than the cause from a wider stance. It’s likely why oestrogen suppression alone is such a poor way to control endometriosis and endometriosis can be present in those with naturally low oestrogen .
A big part of the struggle for us is there are some holy cows in the understanding of endometriosis that perhaps aren’t really well understood or properly researched as they should be. Assumptions are made and associations drawn when actually it’s more complex and nuanced. Hysterectomy may well be your best option, but the surgery must include excision of any endo is essential wherever it is beyond the uterus, as it’s such a disruptive tissue . You might find Katie Edmonds book Heal Endo helpful to navigate some of the symptoms and pitfalls. Xx
Such an interesting post! I'm 40 and it's only been very severe in the last 12 months. However, like others I think I had quite a few problems for a while that I didn't register were cyclical with bowel issues etc and I had a huge amount of lower back pain. If someone put any pressure at all just below my coxxyx I went through the roof. I couldn't understand why I couldn't do any exercise like yoga or anything that had any element of pressure on that part of my lower back to my bum. I think mine was triggered by a miscarriage in 2018 and it started to creep in then as I'd never had any issues at all until that point. If anything, I had dream periods (if there is such a thing), never had any pain or bloating since I started at 11. Had two children in my early to mid twenties and still all good. It was only after my miscarriage that my problems started x
I began having issues after having the COVID 19 injection in dec 2020 - I have now been diagnosed with DIE in nov 2023 - no familial link etc
There has been new recent research published sept 2023 into the effects of the injection on menstruation - the sample was huge - approx 70,000 subjects with an over 50% incidence of changes including causation of post menopausal women.
I am convinced my issues began shortly after I had the injection - by March 2021 (just 3 months after) I first presented to GP with pain, irregularity, tiredness and begged them to belive me that I knew something was very wrong - was palmed off with pain killers 2 years only last month have diagnosis
I am so sorry you are going through this and anyone else reading this post - I empathise with the pain, disruption to your lives and how debilitating this is and unless you have it you won’t understand the severity of the pain and how it makes you feel needing time off work etc. best wishes to all x
Hello Winnie,
Ahhh yes, I was wary of explicitly saying about the COVID vaccines in case people here thought that I was being paranoid or trying to make a political point, but I can say now that our stories are similar.
My symptoms started in May 2021 . . months after getting mines. Very strange that I was suddenly having heavy bleeding and pain from nowhere. I understand that there is some kind of link in terms of inflammation and the bodies immune response.
It was my own GP who first said "yes, we have been seeing a lot of people like you" and she disclosed that her own cycle had been disrupted too. Further conversations with colleagues and my Gynae specialist, people are anecdotally sharing similar stories and that there is a link, although no one can say for sure and there would never be any compensation as it was my own fault for agreeing to take the vaccines at the time.
I work in Health and Social Care, so although I was unsure at the time, I went ahead with the vaccines because I didn't want to potentially contaminate vulnerable people.
Maybe one day we will hear about the true scale of these issues. And maybe that is why the Gynae waiting lists are so long! x
Indeed very similar! I also work in healthcare and felt a bit pressured to accept the vaccine
You may find this link interesting - it is a summary of the most recent studies I mentioned above
youtu.be/qZJ52SftTk8?si=ZMd...
My consultant gynaecologist also side eyed me when I mentioned I felt the two were linked, and have asked she include my views in my notes along with re- stating the time line from my first injection.
It is possible that the human trials regarding the mRNA injection failed to include a large sample of ‘women of childbearing age’ due to the possibility of candidates being/ becoming pregnant - hence a huge proportion of humans not represented - nothing political, just factual science and me wanting the answers of why I became like this nearly overnight.
Thankyou - the video was very interesting. It makes me feel less alone in having these experiences
Hey Kittie5117 I never had issues other than occasional polyps which got removed several times, no pain, no nothing. But when I was 39 I suddenly stared having instances of swollen tummy. Still no pain but CA125 went through the roof. Oddly enough it all started after a course of very strong antibiotics. And even though doctors are sceptical I read up a lot about endo and it seems to have inflammatory nature. Allegedly can also get impacted by gut microbiome disruption - there's some scientific research on that. Stress is also a huge contributor.
Took me almost a year to get diagnosed and I had a lap surgery when I was 40.
Since then I've been on an elimination AIP diet, acupuncture, yoga, TCM, etc. but no hormones - it was my personal choice and I know might not work for everyone.
Hello Lemon,
Thanks for your comments. Yes, I would be willing to explore other types of treatments (no hormones) and therapies. I wonder if one day we will find out more from research about Endo . . .it's still a bit mysterious. I was worried that childhood trauma and stress could have manifested in my body in some way, I know that is one school of thought, but there are likely other factors such as hormones and inflammation
I am looking forward to getting my Hysterectomy to find out what is actually happening inside of my body!
Thanks for sharing your own experience x
I’m another one who started experienced heavy periods only after receiving the covid vaccines. After investigation, stage 4 endo was found and operated on.
I’m not a conspiracy theorist in any way and had all of my jabs as soon as I was offered them. However, I feel that it’s just too much of a coincidence to have no trouble at all since starting my periods age 12 and then suddenly have problems (age 38) literally the month after my first jab. In a way, I’m glad that the jab seems to have ‘triggered’ the endo, as it has obviously been growing away for years without my knowing. I was also lucky enough to have private cover through work so that I could get it investigated and treated straight away. I do feel however that it’s yet another example of women’s health concerns being brushed under the carpet - there are too many women with similar stories for medical professionals not to be aware of the pattern.
Gastro and Bladder problems and anxiety with Endo - help please xx
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