This is my second post and just want othe... - Endometriosis UK

Endometriosis UK

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This is my second post and just want other ladies to speak to. Don't know if this is Endo.

awoik123 profile image
6 Replies

I have always had painful periods since they started ( over 20 years ago ) End of december I had an early miscarriage ( aged 37 ) since then I have been in awful pain, I cramp daily which after 7 months I now cope with but alot of the time I feel wiped out, get headaches, feel sick alot of the time, and get VERY down days ( not helped by now having to go on the sick which I hate, but feel to ill to even work ) Am waiting to see a gynae because doctor suspects endo, but no one is sure. My question really is after suffering all this, in the last 2 weeks I have now got what feels like hemorroids ( which i have never had ), so Its making me think it could be IBS like the doc has suggested, but why after all this time would bowel problems show? Another endo sympton? So sorry again for the long post, I feel lost and very down right now xxx

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awoik123
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Leo_ness profile image
Leo_ness

Hi Awoik123,

I am 30yrs old and have had bad period pains, nausea, upset stomach, constipation, the runs, dizziness, tiredness, kept getting flu like symptoms for as long as I can remember. Endo last year after my 1st lap after years of visiting various doctors, psychologists and gastro specialists- all to be told there is nothing majorly wrong with me and I could just be IBS, Anxiety and depression so they just told me to eat right and go on anti-depressants.

I knew deep down there was something actually wrong but its hard to believe yourself when Doctors are telling you otherwise. It was only when one day a GP I had been seeing on a regular basis for about a year said 'You seem to be getting sick a lot and maybe you should go see a gyno and see what they say for possible endometriosis'- I didn't even know what it was.

Well 7mths after that visit and after the laparoscopy, The nurse told me I had stage 3-4 Endo. I just burst out in tears with relief. It was the biggest relief I have had just to know, what I had been going through was not all in my head and I wasn't going crazy.

The only way they can confirm you have it is to have the key hole surgery unfortuantley. They will ask you a few awkward questions and they will do an internal examination which is awkward. They will push on your cervix and push on your lower tummy and you have to tell them how you feel. Then they will decide whether or not to do the surgery.

Are you on any meds at the moment? like the pill or anything.

I know exactly how you feel, I am currently going through the Zolodex treatment, I had my 2nd injection yesterday. Im also on the pill, a pessary to help the cervix open so they can get the Mirena in as I haven't had a child and am on an depressant to help with the moods. My body feels so foreign to me its scary.

Its an ongoing battle hey, effecting every part of life in all aspects; my marriage, work, financial, health, social life and day to day activities.

The majority of people I work with are men and trying to explain why I have so many days off is like talking to a brick wall. They don't care why, They just say "just get better and minimise the time off". I fear that I will eventually let me go. They have even said to me " Well maybe we should get a man to do your role and we wont have this problem"!

Just know, if you do have it your not alone and if you find out you don't and its something gastro related then they can put you on the right meds. xxx

You thought your post was long! :)

ashleigh-13 profile image
ashleigh-13

Hi :)

My post might not be as relevant as I've not miscarried and I'm 23 - but my symptoms are certainly similar!! I started with problems of painful periods and extremely painful during and after intercourse.

For years I've been "diagnosed" with IBS and an intolerance to gluten - although docs never went further with checking out the gluten issues although I'm convinced I'm highly allergic!

Anyway....I've been bleeding out of my rectum for about 3 YEARS now (which I've only recently told them), every time I pass my bowels and sometimes just during the day in general. It's horrible. But they always waved past that symptom and said it was IBS. Now I am in the middle of being diagnosed with possible endo, they are hugely interested in this symptom - thank goodness!!! It might actually be a problem afterall - So I would say yes it's an endo symptom.

I feel very lost and down right now - no one I know has heard of this or if they have they don't understand. My poor partner is putting up with my mood swings and all this female talk!! And the worst bit is the cramps and pain.

I agree with Leo_ness, if you have it they will help and if you don't they will get you to the right department! Just don't be afraid to ask them loads of questions and tell them every inch of info you have about your symptoms - I've learnt the hard way as when I was 16-17 I was too embarrassed to tell anyone at all xxxxx

I run my own business and I can't take a sick day etc otherwise I don't make money - so life is tough, but remember simple things like drinking lots of water and heat packs on any painful areas

Hope it works out xxxxxxxxx It's nice to know I'm not alone, I'm sure it is for you too!! xxxx

JennieJo profile image
JennieJo

It could be endo but also could be adenomyosis which is sort of like endo only in the womb and I'm sure I read somewhere that it can be triggered by some sort of trauma like miscarriage (though you might want to check that). If the do a scan they can sometimes tell if you have that because the lining of the womb is extra thick - at least that's how my consultant suspected I had it. I had endo too so hard to tell which symptoms for me were endo and which adenomyosis but I certainly had cramps pretty much most days. I also suspect I might have developed it either after miscarriage or a termination I had to have (not voluntary one but baby was too ill to survive).

I would definitely get a scan done. They can't diagnose endo specifically - can only really be done by laparoscopy - but there can be signs such as if ovaries aren't moving freely which can mean they're stuck down by endo etc and they might be able to look for signs of adenomyosis.

Don't get fobbed off with being told it is IBS. IBS can be a symptom of endo and I was told I had IBS when really I had ovarian cysts the size of apples! Hope you get sorted - good luck.

chelsies profile image
chelsies

Hiya im 22 and was recently diagnosed with endo and your symptoms do sound similar. However my friend suffered a miscarriage earlier this year and also began getting endo symptoms she was however investigated and diagnosed with pelvic inflammotary disease. I dont know much about it myself but apparently it can be quite common to get after miscarriages so you could ask about that too. I hope you get a diagnosis soon. X

awoik123 profile image
awoik123

Thankyou so much ladies for your replies, I have to see my doctor again soon so will take take the info you have given with me and see it that will get me somewhere. I am sorry you all have to go through this but am grateful for your help xxx

Shila profile image
Shila

Hi, so sad to read your stories. I was diagnosed with severe endometriosis in 2000 at the time I was 32 and like you suffered with painful periods since my teens. I accepted for years the message that I was just unlikely to suffer with painful periods as this is what is taught. After three operations over 6 years I am now healthly and almost pain free not due to the help of conventional medicine but due to seeing a Nutritional Therapist in 2008 and taking my health in to my own hands. For the last 3 years I have not taken any pain killers!

At 1st I was sceptical about seeing a Nutritional Therapist but gradually as my symptoms improved I decided to learn more about the power of food and decided to become a Nutritional therapist myself so that I could help fellow sufferers. The main areas to focus on is to increase your intake of good fats expecially omega 3, cut down on sugar, avoid diary and wheat.

Nutritional Therapy works on the premise that each of us are biochemically unique and the aim is to get to the root cause of why you developed endometriosis, for me it is due to the fact that I have a genetic defect on my detoxification pathway in the liver that metabolises oestrogen. In addition my diet was poor, I thought I ate healthly but I didn't. Although I wish I never had endometriosis I now look at it as a positive as it has led to a career change and my true vocation in life and more importantly I am in charge of my health and understand how my body works.

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