To be relieved I have endometriosis?

[kellyann4]

This might sound odd, but let me explain...

Since I got my period at 11 I was in seething agony. I'd cry, be sick, get the runs. It wasn't normal and doctors just said that sometimes girls have bad periods. So I had mefenamic acid growing up which helped a little, I could go to school at least. Then when I was 16 I went on the pill. The periods were still bad though.

I remember explaining it to a nurse, she said I shouldn't get bad periods as it isn't a period but a withdrawal bleed.

I have just turned 26 and I have found out I have endometriosis and I just feel a little less crazy?!

I would still get the runs every month, terrible bloating, would rush to the toilet after meals and would have people telling me I need to cut out certain foods etc but it never helped. I was sick of the "eat healthier" lectures.

I would get contraction like pains every month that would wind me and stop me in my tracks (even on the pill), I would get weird pelvic pain that left me in hot sweats - I thought I had Pelvic Inflammatory Disease or something, there's a slight discomfort/pain every time I have sex and I thought that was something just wrong with me; maybe I needed to relax more? I even thought I had an STD, but all negative.

And now finally I know what it is.

I am a little sad and scared regarding fertility as I'd like to have kids in a few years. But has any one else suffered? Do you have any advice?

I can relate!

I remember in the first stage of labour thinking - this is nothing compared to my periods. And since I gave birth they’ve never been as bad since, so that’s a blessing.

I’m glad you got a proper diagnosis, it can be hard to get. Even if you’re still in pain maybe helps to feel that you have the knowledge now?

Ps I had every one of your symptoms, and conceived naturally in my early 30s using temp charting. The best of luck to you x

Same here. I came round from the anaesthetic after my first laparoscopy, the consultant held my hand and said “we found extensive endometriosis” and I said “oh thank god”.
I was just so relieved that I wasn’t making it all up or unable to cope with normal levels of pain (as plenty of doctors had implied). I use to faint off the toilet every time I had a bowel movement during my period. Truly horrific.

I did have to have IVF but we had make factor infertility too, luckily we conceived first round of treatment and I had problem-free pregnancies and delivery.

male. Not make!

As someone with endometriosis also, it doesn't sound odd at all to feel a sense of relief.

A diagnosis after so many years feels like a relief for sure. I think my diagnosis took 8/9 years, which is about average sadly! I started going to the doctors with symptoms at 18 and eventually got diagnosed at 27.

It felt like fight after fight to be taken seriously. It was always as if I was exaggerating, or they thought I was a wuss. For the first 5 years every single doctor I saw was adamant rogue bleeding must be being caused by an STI. Even when tests were clear it was still always suggested again the next time I visited. It felt like I was going in circles for years.

Unlike you however, I have found that diet has helped massively. I used to be in quite a lot of pain every month. Not having dairy was the biggest thing and has made such a massive difference.

Lots of women with endometriosis also go on to have very normal pregnancies and no more trouble conceiving than "normal" so don't let that bum you out too much

Thank you everyone!

It's so positive to hear others experiences. I didn't even know what it was until I googled and it was a lightbulb moment.

Regarding the diet - I am a very healthy eater - however, I'd get the odd comment about how my bloating was due to my diet if I ate a burger or something usually from MIL. But it feels good to say "NO actually! I'll enjoy my burger"

I had endometriosis and I remember that pain so well, it was horrendous! I remember being in work one day and I had to leave it was so bad, and I was waiting to get the bus home and I was doubled in two in pain, I could hardly walk. I started the pill soon after that and it really helped with the pain.

We did have a little difficulty conceiving and at that point I did some research and came across maya massage. It was the best thing I did......it loosened up all the adhesions and dislodged old clots and the first period after starting the massages was really heavy so it definitely did something. And then we conceived naturally 2 months later, and I got pregnancy very quickly with my second.

Not odd at all. I don't have endometriosis but I have other conditions, and it is perfectly normal to feel relieved to have a name for your condition and to be relieved to finally know for sure what is happening. At last, but by no means least, to have it acknowledged that the pain and symptoms you've been having are genuinely there.

Not the same condition but after years of being told it was in my head, or I had to get used to period pains, I was so relieved and pleased when my bowel condition was finally diagnosed.

Totally normal.

It's so hard to get a dx - took me 14 years, an ovarian torsion and 3 lost babies.

You're relieved because now you KNOW what you're dealing with and it will be (slightly don't want to raise your hopes) more able to access treatment.

Endo CAN affect fertility but it's not a foregone conclusion, in my case I get pregnant VERY easily I just struggled to maintain them. But after first bout of treatment I had dd.

Wishing you so much luck and Health

Totally normal!

If you haven’t already looked then www.endometriosis-uk.org is a really good website. As well as lots of information they also have support groups across England.

Congratulations on getting a diagnosis! This will change your life for the better. Now you have one, do you have a treatment plan? Are you under a specialist? Can I ask how you were diagnosed?

As above endo Uk is an amazing charity and place to start looking for advice and using their forums. I highly recommend you talk to people. They’re a friendly bunch on there.

My little boy is nearly 2 so don’t rule out the possibility of children. People are affected in a magnitude of different ways.

There isn’t a one sized fits all approach to instant improvement for endo but things will get easier for you.

Yep, also relieved here too. Freedom from the ‘the pain must be psychological’ brigade. The pain really wasn’t in my head, made up or anxiety. Oh, and that my ectopic pregnancy really wasn’t likely to me being ‘promiscuous’ either…

4 naturally conceived babies with 1 Fallopian tube and 1 ovary on opposite sides.

@Aahhwoof the diagnosis was quite lucky.

I went to the doctor regarding my pill, just my next prescription. I mentioned period pains, she asked if the pill improved it, I said barely. She then asked to change my pill but I've been on this one a good 5 years and happy - whereas the pain was worse on the others.

My file then showed the constant visits for pelvic pain, bloating...the many blood tests with no interesting results. I then was referred and had a scan which showed it.

No idea on a treatment plan yet as I only just found out and with everything going on it's up in the air.

I do think it takes one doctor who takes you seriously. I moaned about back pain for years and every doctor said "you're a student/worker/active and it's your anxiety/stress/posture" and then one said "hmm let us just get an X-ray" turns out I had scoliosis and now I receive regular physio to help manage the pain!

@Graphista sorry to hear about your struggles but thanks so much for the encouragement and positivity!

Same here OP. Its a horrible disease though.

Your description is so accurate!

It's shocking how many of us suffer and are dismissed as being over dramatic about our periods.

It took me about 15 years to get diagnosed.
I later conceived naturally and had an easy birth with DD.

I'm 20 years into endo hell. I was one of the 'lucky ones' who was diagnosed at 18 because I had a wonderful doctor who finally listened when I got to uni.
I've done the surgeries and endless medicines and now in forced menopause to see if hysterectomy is a viable option. I'm awfully young but my entire adult life has been dominated by the contractions, bloating, pain and extreme exhaustion.
Push, push, push for treatment. The hormonal treatments never helped me but acupuncture to manage the pain, coupled with laperoscopies have given me ways to manage the symptoms.
Best of luck

Thanks op

Unfortunately medical misogyny is particularly rife when suffering Gynae issues. They're woefully under researched and under dx.

I was a forces dependent prior to dx and so had lots of different gps Male and female.

Despite classic, textbook symptoms first reported at the age of 14 NOT ONE referred me to a gynaecologist.

I've only recently learned there are issues with gps referring to specialists generally - they're massively discouraged/disincentivised to do so! It's a hidden scandal!

I was put on the pill which reduced but didn't eliminate symptoms, but every few years whichever pill I was on would stop working altogether and symptoms would hit with a vengeance. Even with admittances to a&e due to severe pain, bleeding, dizziness, anaemia, nausea & vomiting, diarrhoea and fainting STILL nobody referred to gynae.

I had countless pregnancy tests, scans, Sti screening (I've never had anything but thrush and uti's)

Even after the ovarian torsion the cause was not investigated.

It was following the 2nd mc which was an odd one anyway as twin pregnancy but one in womb one ectopic. Initially dx as "straightforward" mc and I was in hospital following d&c when ectopic symptoms increased and that was dx. Specialist gynae surgeon did that surgery and not only dx the endo but was livid upon learning my history that I'd NEVER been referred for endo investigation.

Her words I was "riddled" with endo and old scar tissue. Pure luck it hadn't affected areas that impacted conception.

A 3rd surgery to remove as much of the endo and scarring as possible.

Medication for months after to "shrink" what was left and eventually I was able to ttc and had dd.

Was carefully monitored throughout that pregnancy.

Unfortunately due to a completely separate medical issue it turns out I couldn't risk even getting pregnant again after dd. She and I barely survived the birth.

Heartbreaking as I love kids and wanted a big family.

Moved again due to ex's job and next gp I had was an arse who refused to continue the treatment plan I was on for no other reason than it wasn't his idea! Tried changing gp and that gp refused on the basis she "wasn't a fan of pumping women full of hormones" I honestly wonder how the hell these people are allowed to BE drs!

Eventually found one who would accept the treatment plan.

I've then had issues as certain meds have been discontinued for various reasons.

Eventually needed more surgery which helped for a while.

Then one gp came up with the idea of prostap which worked wonderfully the first time but had no effect the 2nd.

I'm now, thanks to a gp who actually bloody listens to patients! On noriday continuously so I don't have periods/withdrawal bleeds at all! They are NOT a necessity contrary to popular opinion.

I'm not currently sexually active so no chance of missing a possible pregnancy and bluntly even when I am because a pregnancy would be a potentially fatal risk to me I am SUPER careful with contraception anyway.

Problem is this gp is massively popular so getting appointments with her is extremely hard and I've had problems with others in the surgery being reluctant to prescribe me the noriday.

I really hate medics thinking they can change a treatment that is working for a patient basically purely on their own PERSONAL and NOT medically/scientifically based opinion. Shouldn't be allowed!

The noriday works brilliantly for me and as far as I'm concerned I want to continue with that until I'm through menopause.

You are at a very different stage to me though which can be tricky.

When I stopped treatment to ttc (the meds I was on can cause serious including fatal birth defects) the symptoms returned viciously and suddenly.

Caused some distress for my work colleagues as I kept fainting and bleeding everywhere! Embarrassing too! Destroyed 2 office chairs.

But I have to say they were incredibly supportive and kind, and horrified when they learned of the difficulties I'd had getting dx and treatment.

Endo Uk are fab - though must admit I've not dealt with them for several years now.

Take support where you can get it, don't put pressure on yourself to push through symptoms etc.

It's an illness like any other and utterly exhausting to deal with so rest when needed and look after yourself.

I have endo too and the diagnosis was a relief. I also have DC, conceived naturally although almost made IVF stage with the first due to length of time.

I had no symptoms after I had my DCs. It was great. They returned a couple of years ago though and I'm on the waiting list for laser surgery again. I've been getting unbelievably bloated lately, now I have realised why reading this thread!

I’m another who was relieved to get a diagnosis. I had bad periods within a year of them starting. I went on the pill at 16 which helped a bit but the side effects seemed to get worse as I got older. I’ve been admitted to hospital three times with sudden onset abdo pain, every time they suspected my appendix but it never was. Scans showed nothing, colonoscopy was normal. I was still in agony. Last time I had a flare up I had to go off sick for months. I agree about finding that one doctor - I went as said I thought it must be gynae since everything else was normal. She agreed to do a referral but wasn’t even sure if they’d see me! Fortunately they did and said my symptoms warranted a laparoscopy. I was so relieved when I woke up and heard they’d found/done something. I was better within days of my op (despite being tender from
The incisions). Since then I’ve not been too bad, I can live with it. One observation I’ve made is that using tampons make my cramping worse. I’m much better with a menstrual cup.