Hi guys, I'm new here but felt the need to sign up for somewhere to chat. I'm Kate, 26 years old and I've just been diagnosed with Endometriosis.
Where do I begin? When I was 19 I went on the pill, which didn't agree with me followed by the injection which again didn't agree with me. I stopped contraception when my relationship broke down and whilst I'd have painful periods, I didn't have the side effects as I had with both types contraception.
3 years later and I began the cerazette pill (April 2014) I guess just to be safe which caused me no end of trouble - 14+ days bleeding, abdominal pains, weight gain, loss of hair etc. I stopped the pill but the pain remained as did the erratic bleeding. Eventually I was sent for an ultrasound which came back clear and I had numerous blood/urine tests at this time too. They advised it was PID for which I took numerous anti-biotics but the pain remained.
During this time I've had quite a bit of time off work and I was often left feeling like a hypochondriac because I wasn't getting diagnosed and I felt no one really understood what I was going through. I became extremely low, would suffer from panic attacks and I'd become a shadow of my former self. I've been on beta blockers for almost a year now. I've been put on a waiting list for therapy.
I ended up going private because my first gynaecologist was dismissive and said the coil would be an option (it's been in for 6 months) and my second gynaecologist told me I had IBS. Thankfully, the consultant I met with privately sympathised and believed it could be endometriosis- which I had suspected for quite some time. I had my laparoscopy 2 days ago and they found it and have now recommended hormone therapy. I should feel some sort of relief but I fear my issues are going to continue.
Does anyone else feel like this causes depression and anxiety? I don't want to go out, can't imagine meeting anyone and starting a relationship and I feel like my life is on hold
Sorry for the long post!
Love, Kate
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sugarfixxbeauty
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Sorry to hear that you have been struggling for a long time with these symptoms.
I have recently been diagnosed with Endometriosis and Adenomyosis after a year and a half of chronic pain.
I am very much like you my body doesn't like the synthetic hormones in contraceptive pills.
I am pleased to hear that you have now been diagnosed with Endometriosis .
I understand your anxiety that comes with endometriosis as there is cure I think we all worry how long will it be before it returns.
It causes me anxiety to think I will be going on and out of hospital all my life to keep having Endo removed so you aren't alone in your feelings hun we have good days and bad, just take one day at a time.
Do you think you are having side effects from the Mirena, is it making you feel dedepressed?
I had a bad experience with it it made me feel low, I gained weight and got acne and had bad back and pelvic pain and I bled heavily for the 3 months I had in until I couldn't cope with it anymore.
Mummy 1982 - I think a lot of us thought that once diagnosed - but it doesn't have to be that way!
Far too many women are not being told the difference between the surgical techniques in removing Endo. When Endo is burnt in some cases 80-90% of it is not completely removed - so it very likely to come back. The relief women get from this type of surgery may be short term, or some get none at all hence the perception so many women have that frequent repeat surgeries are needed and this is "the norm" when you have Endo..... Burning Endo can even cause damage to structures in some cases too.
You need to make sure the Endo is being cut out = Excised.
This is why it is so important to see a really good Endo specialist:
Firstly they need to be able to recognise what Endo looks like in all it forms, then they need to be able to thoroughly remove it all by excision.
The statistics show that in the vast majority of women when Endo is removed like this it does not recur. In most cases what women think is their Endo "coming back!" is either disease that was not completely removed or was missed by the doctor so never removed in the first place.
You should join EndoMetropolis Facebook group it's a great educational Endo group, with some of the World's best Endo Specialists Doctors as members. If you look in the files section on the group there are lots of really useful documents.
THE most important thing you all us ladies can do is educate ourselves on the disease - in order to stop doctors fobbing us off with inadequate ineffective treatments!
Yes I think what you are saying is correct it's almost like they don't think we have researched symptoms and side effects of treatments for endometriosis.
Since my diagnosis 8 weeks ago I have read lots of information and made all the changes I can possibly make myself to help keep my endometriosis away.
Thanks you for the links to the websites I will definately have a look at them. Xx
I meant to say in my original post too! - so many Doctors don't tell women but none of the hormones ie Pill / Mirena / Prostap, Zoladex and other GnRH drugs make Endo shrink or go away. Yes they do help some women with the symptoms in some cases, and if that is the case then great - although that may come at a price for some with GnRH treatment.
Therefore we shouldn't be made to feel as though we have to take them - if we don't get on with them and they don't help the symptoms! It is all our personal choice!
I have been through it so many times to try and help my "heavy period" before I got my diagnosis of endo, each time I reacted badly with lots of side effects, I would go back and say it wasn't agreeing with me and they would be like I don't understand what the problem is and I had to be willing to put up with some side effects.
I got to the point where I stopped asking to try different contraceptive pills and hormones because nothing helped me I felt like the side effects I was getting out weighed the benefits.
I feel like unless you are willing to take what they offer they are not intrested I had this for many years before I got to my current GP who has been great and has said herself not all women cope well with synthetic hormones and I'm unfortunately one of them x
Thanks for the tips! My Endo is 'superficial' - they advised it was all over my womb but too small to get rid of, hence the hormone therapy being offered as treatment. I just don't know which route to go down. Ideally I'd like to rid myself of the pain so I can begin working out and living my life xo
Too small to get rid of - never heard that one before lol! I'm pretty sure that would not be the case and may? be just "another!" excuse that is used to fob us off.
It is a well known with specialists that that the severity of pain with Endo isn't reflective of the severity of the disease, some women with a small amount can have as much if not more pain than someone with severe disease.
I would ask for a referral to an Endo Specialist. If you join EndoMetropolis group, ask for a colour copy of the photos from your Lap - which we are allowed to do both Private and on NHS. You can upload them on there and the Specialists will give you their opinion on it too.
Thanks for the info! At first when I came round they said everything was fine and there was no issues and then I got myself upset thinking they'd not found anything until they came back later and said they'd found Endo but it wasn't 'anything to worry about' - clearly it is considering I've been in pain for almost a year. I felt so stupid! Xo
It's dreadful the way some women with Endo are treated by the medical profession, is it any wonder we get stressed and anxious! If they found Endo that is a possible cause / explanation for your pain.
Please don't let them make you feel stupid - this is exactly what I mean about getting yourself clued up on the true facts with Endo. Try and gather your strength to learn, then once you understand you will be able to advocate for yourself and see through the nonsense some "doctors" come out with to fob us off in order to make "their!" lives easier!
Thanks for your reply Jo! I can't be fully sure if the mirena is causing me to feel this way? I feel like it's starting to settle down in my body but I've had a lot on personally (bereavement, low self esteem etc) so ifs hard to pin point what's started it. I'm going to see what my specialist says, I just worry that I'll be this way forever and it'll stop me living my life. Xo
I know it's difficult to work out what the cause is when you have lots of other things going on.
I really do hope it settles for you hun.
It's good to talk to your specialist but ultimately you have to listen to your body.
My previous Gp who fitted my coil refused to take mine out because it was less than 6 months and he refused to accept that what I was experiencing was side effects of the mirena even after I said you only have to Google mirena to see the side affects.
I made a appointment with another GP and they removed it and within 2 months I felt more like me again.
I had the Mirena when it was first released and doctors insisted it didn't cause the same mood swings and depression as the pill - like lots if girls here, I've always found the pill made me "a bit bonkers" I made them take the Mirena out after about 7 weeks. They were very cross with me and told me I needed to give it longer, but I couldn't deal with the tearfulness and anxiety.
Having only been diagnosed with endo stage 4 a year ago, I've been told the Mirena is now widely accepted as causing depression and anxiety to get worse especially if you are prone to it! Who on here with endo isn't ?!!
I was fobbed off by my GP for years with depression and anxiety and all the antidepressants they could throw at me, but I wasn't getting better....loads of counselling, emdr, therapy, you name it - and I felt like a basket case because nothing helped.
I ended up paying for a private psychiatrist who ran simple blood tests (never done before) found anaemia which was then followed to awful periods, which I'd never been asked about, and I phoned a gynae (general) who found the endo but didn't really know how to treat it.
I've since found a specialist who has just performed a major excision and I'm nearly off all my antidepressant meds.
There is a light at the end of the tunnel and you're not going mad. The exhaustion alone is enough to make you depressed and having suffered from panic attacks as well, I've realised a lot of it was trying to carry on "as normal" and being completely overwhelmed by the pain and tiredness.
Don't give up - look on Lindle's list for an endo specialist and demand a referral. I wish I had been diagnosed years ago and saved myself a lot of years!
I absolutely sympathise with you and am sending hugs your way. My story is extremely similar with IBS diagnosed, PCOS diagnosed and being ignored for years thinking I was going insane at times and thinking people thought I was making the severity of the pain up.
After being diagnosed in September 2013 and then a mistake leaving me off the waiting list for the operation for over 8months I finally had the op in September 2014 and was told because of the severity of the endo connected to my bowel, bladder and ovaries I would need an opp with a specialist. I didn't meet the specialist until December 2014 and was given the decapeptyl injection which had helped the pain, well initially anyway. I was told due to the severity of the endo my op would be the beginning of the year. Another appointment with the colorectal department having no idea why I was there and then telling me so. Waiting and waiting and another appointment with the specialist apologising to me and still no idea of the operation date. Because of all of this my depression has spiraled out of control at times, my husband is incredible but our relationship has been strained due to the endo and work as well as my day to day life all difficult to deal with. I am on two seperate types of anti depressant, reduced hours at work and no control over my own body or my life. I am 37 now and still unsure whether I will be able to have children which I desperately want.
I just wanted you to know you are absolutely not alone, we are here on this site for you and I wish you a pain free day.
It's awful isn't it - yours sounds far worse than mine! I do think I'd still be sat here undiagnosed if I hadn't had a private consultation. It's crazy what you have to endure for a laparoscopy. Xo
There isn't such a thing as worse on this website Kate. We are all in the same boat, it's just a relief to be able to share with each other and to know that we aren't losing our mind.
You're not wrong - it took 18 years from my initial consultation (at which I had a lap and was told there was nothing wrong!) before I was diagnosed with stage 4 endo with bowel complications and IC....18 years!! You're doing the right thing, lots of love xx
I think that living with Endometriosis and the toll it takes on the life we all expected to have is not to be underestimated.
I have suffered with Depression and Anxiety for nearly as long as I have with Endometriosis. I feel that both have played a big part in my life and on many occassions I would go into my GP's to discuss my moods and painful periods and would end up crying with relief at talking about it, to then only ever be handed anti- depressants because I was obviously feeling low! Many years ago I once asked a fresh out of training GP whether I was suffering with Depression or whether my obviously defunct hormones were the cause. She very honestly said that they really don't know as the hormones affect the serotonin levels and the serotonin levels affect the hormones - there is a break in the link somewhere and they didn't have the knowledge then to find out where the break was, so they gave anti - depressants in the hope that by speeding up the information to/from the brain then the break was passed over and the patient would feel some benefit in negative symptoms. It made some sense to me even though I have no idea whether that information was correct (I will rely on someone to correct it if this is wrong) and hopefully the knowledge has now moved on. In a bizarre way having a GP telling me that they didn't have the answers either made me feel slightly better about how confused I felt. It has also been true that both anti-depressants and hormones have aided my emotional wellbeing at various points. I also tried many alternative therapies. like reiki, hypnotheraphy, meditation and tapping for my depression/anxiety with varying degrees of sucess but non of them stopped the Endometriosis growing - that takes physical intervention (of which there have been many too!)
We moved around a lot and It took me years of investigations to get diagnosed with Endometriosis and finally some treatment. Like everyone here, the condition has taken quite a toll on my body but I think that the years of sitting in front of Medical Professionals being unheard and not having my condition explained properly have taken a big toll too.
Like you, I am new to this site but the knowledge contained and reading the posts of fellow suffers have been so helpful (thanks Lindle in particular but to all you ladies in general). I feel that I have learnt so much more about the Endometriosis and it has empowered me to 'own' my journey. I thought that I had finished with Endometriosis after my hysterecomy (ovaries, cervix and uterus) but at the age of 52 I have finally accepted that the 'next' operation will not 'cure' the Endo - I have to be in this for the long haul. So, I am gathering knowledge, trying to change my eating habits to help with inflammation (endo diet), trying to loose weight (lots!), being as active as I can (aquafit), gently and slowly trying to work core muscles to give my poor overworked leg and back muscles some chance. Most importantly I have insisted on being referred to a BSGE centre. They may not have all the answers either but they are the best that is available to most of us at the moment - and individually and collectively we are all worth only seeing the best!! I don't know if any/all of these changes are making a difference or if it is just that I feel like I have regained some control, but I do feel a bit better and the pain has decreased.
Sorry for this very long winded reply Kate but I just wanted you to know that you are not alone with these feelings - what is happening is overwhelming and is a lot to deal with. To help get through the feelings of being stuck, I have always found that breaking that bigger picture into areas of what I could control and what I couldn't - and then only trying deal with what I could control, really helped. By identifying what element of the 'could control' list was causing me the most problem/saddness, I then put all of my energy and resources (sometimes very little of both availble!) into helping myself in that area. You have made a great start by finding and posting on this site.
I am really sorry to hear that you are struggling sugarfixxbeauty, please have a look at my response above ^^ to Mummy1982 - I would also suggest the same to you. Learning the facts about Endo and making sure you get the best treatment available may help you understand things a bit better, hopefully this might make you feel a bit more in control of your situation and less anxious too.
The inflammatory chemicals released by Endo can in some cases cause "Cytokine Depression" too.
Please don't doubt yourself as it will only cause more stress and worry- you know your own body best!
The whole IBS route drove me mad - that was the main catalyst for going private (since been referred back to NHS under a different consultant and hospital) it's 'superifical' Endo which they advised was throughout my womb but too small to get rid of so my options are pregnancy or two types of hormone treatment - the mini pill or HRT. I just dread having further issues which will cause me to feel worse about myself xo
Thanks for all the information - it is really interesting, though quite challenging to get my unmedically minded head around!.
I always believed (not sure where it came from) that the allergies, food intolerances, ezcema, cold sores and bouts of shingles were because the painful, heavy periods and the continual fight/flight emotions of anxiety depleted my immune system. To summarize - have I understood correctly that the current thinking is that Endometriosis is a symptom of a fault in the immune system (along with all the other allergies etc) and that the depression/anxiety may be sypmtoms of the Endometriosis? Is there any evidence that improving your immune system can affect the physical Endometriosis implants? Sorry for all the questions but I am keen to try and understand all this so that I can best help myself.
I look forward to reading your holistic lifestyle measures post Lindle in due course.
Many thanks again to all for sharing your knowledge.
Hi Lindle, this is really interesting....I've a whole host of autoimmune 'conditions' including anaphylaxis (nuts, all nuts...the jokes are endless!) Which kicked in properly in my teens, way back in the dark ages before food was labeled!
I have been wondering about seeking help with the autoimmune aspects of my condition, having just recently had a surgery for major excision and hysterectomy. Although I'm with a specialist centre (Bristol Endo Clinic) my consultant doesn't agree that endo is an autoimmune condition.
Do you have any advice or suggestions on following this up, presumably with an autoimmune specialist?
Thanks so much for all your work and research. It has literally saved me! X
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