Do I have endometriosis?

You poor thing! Your symptoms do sound as though they could be due to endometriosis but unfortunately they could be due to other disorders as well. The only way to find out if you have endometriosis is to have a keyhole operation called a Laparoscopy. This is where you have a general anaesthetic and a small camera is put into your tummy to look at your pelvis.

To have this done you need to be referred to a gynaecologist. I'm afraid you will have to be a nuisance towards your GP and demand that you are referred. If they refuse you need to change your GP.

It's really important to find out what's going on and to discover the reason for your pain and symptoms.

Please make a pest of yourself and make the doctors listen to you. Maybe you could take your Mum or another person to the appointment for some support?

Unfortunately I'm no expert on your emotional welfare but again I would urge you to discuss this with your GP, if you are feeling really overwhelmed maybe you could contact MIND or the Samaritans.

Best wishes to you.

Barbara x

Hi Sara,

So very sorry to hear your are suffering so much and getting no joy with a referral.Cuddlybarb has explained things really well,so wont repeat info,but I would urge you to see Gp re your mental health as this can be treated successfully. Does your uni have a counselling service or a uni doctor? Could you go to a uni doctor for referral to gynae or for counselling? My sis is a lecturer and counsellor and says students can access a lot of support from there,which is often much quicker than going through own GP.

Do you have family or friends you can confide in and could help you access help -definitely a good idea to have some moral support ,as you do sound in a very bad place.Keep posting here as we are all here for you and can try to help,endo wise .As cuddly barb says it sounds like endo,but needs as proper diagnosis,as yes it can lead to infertility.I was like you at 18yrs,dismissed by doctors as suffering from stress lol ,but at least put on the pill to stop periods.I have been blessed in that I think the pill actually saved my fertility and also until 24yrs controlled the pain to bearable levels.I read all the stories here and it makes me mad to see young girls still being fobbed off and told extreme pain is quite normal!

Be strong and if you not in a mental state to do so,take a family or friend with you and insist you are seen,Say you will put in an official complaint to NHS as we all have a right to be properly investigated.You are totally right to worry as you have your whole life ahead of you and hopefully children,if you choose.

Sending you love and a big hug.do keep posting.

Thanks for the quick replies. Glad I posted now, it's nice knowing that I'm not the only one going through this. Sadly the doctors are refusing to put me on any kind of pill due to pointless reasons They have currently put me into chemical menopause and hormone replacement, which I think is just affecting the mood swings and depression even more.

I've tried being a pest for the past few years and my mum has come to every appointment to make sure they aren't just fobbing me off, but they are even telling her that it's because I'm a teenager and that it's something I'll grow out of. I've put up with it till now but even pain killers don't seem to work as well any more. The only reason I've finally come here to ask for advice is because of the effect it's having on my family and my relationship, I know I'm hurting them and I feel like I can't fully explain what's going on because I don't fully know myself.

I guess all I can really do is nag and nag until something is done.. I gave up at one point because I was just constantly disappointed with nothing being done yet again.

Hi Sara. in my experience the hormones they give you to induce a medical menopause are what causes the low mood. I was put on zoladex last year and within 2 weeks I was like you, hysterically crying, so angry with everyone, suicidal thoughts and basically in a very dark place. These drugs should not be given out in such a way without them explaining exactly what they are going to do to your body. Some people just cant cope as well as others with it. I stopped the zoladex immediately and it took about another month for it to wear off and for me to start feeling somewhere near normal. I would strongly recommend you talk to your doctor about this. You should not be left feeling like this and they are there to help. If you don't have an understanding doctor then go and see another one! Good luck, you are not on your own xx

Keep pestering your GP. I had a laparoscopy yesterday and was diagnosed with Endo. I've had painful periods since I started at age 12 - I'm now 43! I was also told as a teen that I'd grow out of it, was prescribed painkillers that never really worked, put on the Pill at various times, sent for internal (painful) exams then brushed aside when nothing was found. The last few years the pains have lasted a week either side of my periods and gone into my thighs and backpassage. I was told it was a water infection on a few occasions and given antibiotics! I got fed up of this and asked my Gp if there might be some underlying cause and was sent for ultrasound. The trainee wouldve missed the ovarian cysts if a supervisor hadnt decided to check them on the scan, as they seemed to be looking for kidney stones! I then had an internal ultrasound which found cysts, but as these were 'resolving' nothing was done. A year later, still in pain, I went back to my GP, who seemed to think I was making it all up as the cysts shouldve resolved. I really had to insist on being referred to a gynae specialist. She was sympathetic and put me on a Prostap temporary menopause - this stopped my period and the pain, but I got very depressed and took antidepressants for a few months. After the Prostap wore off, the pains came back. The Gynae suggested trying hormonal treatments or a laparoscopy to see if they was anything else present - I really wanted a definite diagnosis after all this time, so went with the surgery. So at least I now know what I am facing and can finally look into the correct treatment options. Sorry for going on, but I just wanted to empthasise that you should never give up trying to make someone take your pain seriously, after all, you're the one who has to live with it!

Sara, I really do sympatise and I'm also frustrated that GPs still don't seem to take this kind of ongoing pain seriously. My mum always says that if men had to experience the sort of pain women do, they would soon do something about it! She had painful periods from the start too a,d was told it would change when she 'got married/had children' etc, but it never did and she ended up having a hysterectomy about my age, as she had fibroids. I'm sorry I can't help answer the fertility thing, as I never really wanted children. In fact, one of the gynae consultants I saw last year told me I should start to think about having kids now, before its too late - so maybe its not so much of an issue, but I'm no expert! I should think there are women on here who could help you with that though. As I said though Sara, don't let them brush you aside, even if they make you feel like you're being a hypochondriac. I keep a symptoms diary so I can explain exactly what I'm going through in my cycle, when I visit my Gynae.

Hi Sara-x,

Sorry to hear about your situation. Many of us on this site go through very emotional times with our condition. It's enough to upset anyone's mental balance so you are not alone in feeling the way you do.

It sounds as though the hormonal treatment is contributing to your bouts of depression and anger. I was given injections for chemical menopause and even with HRT, I had a very hard time. My memory was awful and it took quite a while to recover when treatment stopped. I was really quite down.

I find it odd that while they refuse to test you for endo they are happy to make you undergo the menopause. They shouldn't 'treat' you without a diagnosis.

What sort of specialists did you see? Were any of them endo specialists at an accredited endo centre? If not, I strongly suggest that you demand a referral to an endo specialist. Choose one here bsge.org.uk/ec-BSGE-accredi... or here bsge.org.uk/ec-BSGE-provisi...

Your GP might be the problem in all this. You have the right to change GP but Daffodil makes a very good suggestion of using the uni support services and this might be a better route to take to get the help you deserve.

Take care of yourself. Hugs to you x

So sorry to hear about what you have been going through. Here on healthunlocked we cannot diagnose you with Endometriosis, you will need to schedule an appointment with a gynaecologist and have a laparoscopy performed. We cannot help you. The emotional pain from Endometriosis is not a symptom, it is a state in which we are depressed BECAUSE we know we have an incurable disease that may be with us for the rest of our lives. You sound like you are just having extremely bad PMS. I would not go to a forum to ask whether you have a disease as we don't know. You cannot get an opinion from patients or even doctors without seeing a specialist face to face. I personally don't think you have endo. If everyone who experienced awful cramps and PMS had endo then basically each and every woman would have it.

Another general question, does anyone have any idea if something like the implant will affect the hormone replacement, etc.? I've been trying to sort something out for a while because I cannot take the pill. I haven't had any luck with finding much information on it.

Do I have endometrosis with the sub title , (looking for advice.), can't see the problem in asking that. Sounds to me like someone has their knickers in a knot!!!!

Hope you achieved more at the gps today, if not find another gp who has a womens health female doctor, I have two at mine and they are both brilliant.

Hope the rest of support and advice has been benfitical to you. X

I can't take the pill but use livial which doesn't contain active hormones in the tablets but precursors which the body uses to make small amounts of hormones. I had awful problems on the three month injection where the pain would return after 8-9 weeks leaving me in severe pain again. I then switched to the monthly one which helped a lot but continued to have pain in the week before my next injection. I'm now having the injections every three weeks which works brilliantly. It might be worth changing to the monthly ones but unless recommended by a specialist you won't be able to have them every three weeks. Have you also considered other medications to help with pain such as gabapentin? It works very well for my nerve pain and I've recently started on amitryptlline which is an antidepressant but is prescribed at a far lower dose so don't be upset if this is suggested to you :). Don't give up with getting answers either, but please be aware that you could have a lap which could come back negative for endometriosis but be diagnosed with possible adenomyosis. I also have this and it causes the same symptoms although the bleeding and length of periods is usually longer. It is basically the same as endometriosis but the endometrial tissue has migrated to the muscles with the tissue. Also many of us have other conditions besides gynae ones that can cause severe pelvic pain although I can tell the difference as the pain feels different and can flare up at any time. Whatever is causing you pain I hope you get some answers soon xxx

It might be worth asking for gabepentin for nerve pain as even with the zoladex you are likely to find that your pain also is nerve related which the zoladex will not help at all. I'm finally under a pain clinic and nerve pain/medications are always prescribed routinely. With endometriosis and other gynaecological conditions medications rather than surgery are the main forms of treatment and most specialists will always try to avoid repeatedly operating as that can cause scar tissue to form, damage to nerves etc which will make the pain worse. This is what happened to a friend of mine who had repeat surgeries for endometriosis only to find out later on that she was no longer suffering from endometriosis but pain related to frequent surgeries. Thankfully most specialists wont do this but in some people the endometriosis disappears on its own accord but the pain persists. This is frequently referred to by specialists as pain memory and is one of the reasons gabapentin, amitryptlline are used as they can be very effective but it's a case of finding the right drug as nerve pain can be hard to treat.

Have you considered a referral to a pain clinic? I've seen the consultant twice and am due to see the specialist nurse in two weeks for my first appt so will see how it goes

Definitely keep a pain diary even on good days and not down things such a frequent urination as you could also have bladder pain which can get worse during a period or flare up at any time. I've been given a provisional diagnosis of painful bladder syndrome and see the urologist next week for my first appt and to arrange the cytoscopy of the bladder. So although my first diagnosis was endometriosis I've since been diagnosed with adhesions, adenomyosis, nerve related pain and bladder pain alongside the awful back pain.

If you have no confidence in your specialist can you ask for a second opinion or a new referral? I did this although had to fight for over two year with my GPs for it as my gynaecologist I saw originally wasn't a specialist and I wasn't allowed to choose where I was referred. Next time I made sure they were an accredited centre for endometriosis and I haven't looked back xxx

Hi Sara-x just like yourself I was around 15 when I started to experience more than your average period pain however it was in small doses and not that frequent so I just ignored it and suffered the consequences for a few days a month, however as I got older and became sexually active the pain was coming back more frequently and the pain was becoming unbearable. Cramping in my lower stomach, shooting pains up my back, irregular bleeding after sexual intercourse, tiredness and overall my mood swings were all over the place. Im now 22 and only just been referred to a gynaecologist after constant battle with a previous GP who was male (not saying he was sexest but I don't think he understood the symptoms) From the little experience I have had so far you will need to have swabs taken before a referral just to rule out any long term infections and then your doctor will contact your local hospital for an appointment. As others have said your not alone and asking for advice is perfectly fine, its nice to have some reassurance from other ladies who are going through the same problem. When im having a low day its comforting to come on the forum and vent my frustrations knowing its not all in my head and people understand the situation we are in x

Hi Sara-x, wondered how you are feeling now?

I am the same but still nothing has been diagnosed. Its becoming stressful now