Endometriosis UK

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Do I have endometriosis?

Hi, I've never posted on one of these forums before, I'm just hoping to get a bit of advice.

When I first started my periods at 15 there were no issues whatsoever. However, when I hit the age of doing my GCSE exams, I started getting excruciating pain around my lower stomach, sides, lower back and down my legs, leaving me unable to walk for long periods of time. Then the pains would suddenly stop and I'd be able to just go back to what I was doing.. Since then, the pains have been getting more common and more severe. Now at 19, I'm also getting serious bouts of depression and anger, and it's taking it's toll on my family and my relationship. I will sit there crying for hours, try to harm myself and even get suicidal thoughts. I'll be rude, aggressive, to the point of completely trashing my room, and it's also ruining my university education because I just don't even want to get out of bed any more.

Over the past few years I've had countless doctors appointments and some referrals to specialists, all refusing to test me for endometriosis and just putting me on meds to hide the symptoms. After what I've read online, I'm worried because through the meds it still feels like the symptoms and depression are getting much worse, and I've heard that it can lead to other problems such as infertility.

I was hoping that someone who is getting the same problems or who has been diagnosed with endometriosis could just give me some advice on how to deal with things and how you went around being diagnosed. I'm fed up of feeling like there is nothing I can do.

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Sara-x

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38 Replies

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9 years ago

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

daffodil9 years ago

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.

Sara-x9 years ago

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.

in reply to Sara-x9 years ago

Which doctor had put in a chemical menopause? The drugs could be causing or making your emotional health suffer.

You shouldn't have been put on chemical menopause treatment without a diagnoses and you can't be diagnosed without a laparoscopy. ?

Barbara

Sara-x in reply to 9 years ago

It was a specialist doctor that I paid to see privately that put me on a chemical menopause. He said about how even if it was endometriosis that is causing this it would be exactly the same treatment. He's cancelled every appointment that I've made with him since and the first appointment was about 6-7 months ago. I'm due another injection tomorrow and it does seem to ease the symptoms but can still tell that they are there and it doesn't really help deal with the mood side of things. And every time this medication wears off the symptoms seem to be 10x worse than before. Apparently, I'm only meant to be receiving these injections for another 3 months, not sure what is happening after that..

karrijon9 years ago

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

CharlieSays9 years ago

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-x in reply to CharlieSays9 years ago

I'm currently getting the 3 monthly Prostap injections, but they don't seem to be completely working for me, but they do make it a lot easier. I still get the odd bout of really bad pain. I've been on these injections for the last 6 months and have 1 injection left as they were to try and get me through my first year of uni, even though this seems to have failed. It's really starting to get to me about how little they seem to think this affects people and just try to brush it aside, I can't even begin to imagine how you're feeling after dealing with it for so long. So far they've refused to do the surgery because they think it'll be a waste of time as I'm just going to "grow out of it" soon.

I also hope I'm not being too personal with this question, but has it affected your fertility? Even though I know I'm still very young to be thinking about that, it worries me that it might be an issue. I've read a story about a 20 year old who was told to start for a child at her age just because it might have been her only chance. If it's too personal then there's no worries.

I've had an ultrasound and been told I have cysts, but then nothing ever came of it. I wasn't told anything about them and there was no further tests or anything. I was told that they have nothing to do with the symptoms I've been experiencing...

CharlieSays9 years ago

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.

Sara-x in reply to CharlieSays9 years ago

The symptoms diary is a good idea, I might start doing that. Thanks for the help

CharlieSays in reply to Sara-x9 years ago

No proplem, and good luck x

Brownlow9 years ago

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

Sara-x in reply to Brownlow9 years ago

As far as I'm aware it is a gynae specialist.. but didn't really have much to say about endo when I asked. I'm hoping that if I ever do manage to get another appointment that I'll be able to just nag and nag until he says yes. But his reasoning for not doing the surgery before was that it would be the same treatment whether I have endo or not. He said that the surgery could cause more problems than solve. I'm seeing a different GP again tomorrow so I'm hoping to be able to get somewhere there.

Brownlow in reply to Sara-x9 years ago

Good luck with GP tomorrow. If you strongly suspect you have endo ask for referral to a gynaecologist that specialises in endo. You'll find one via the links I gave and you have the right to choose. It seems to me that general gynaecologists are not sufficiently experienced to deal with endo. In my view the hormonal treatment is not alleviating your symptoms and is causing other problems. Your situation needs to be reviewed.

9 years ago

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.

Bokkie in reply to 9 years ago

Sorry Meganfaithfull, but I think you are being a little bit harsh with your reply to this young woman. No we are not professionals who can diagnose Endo but we are best placed to be able to recognise the painful and debilitating symptoms from both the disease and meds we are given with us all going through it ourselves! We can sympathise at least; that is what support groups do after all. All she is asking for is a little virtual support and feedback. We CAN help with that. You suggest she has extremely bad PMS; how do you know that diagnosis is correct? It has been said by most on this post that she needs to see a specialist and have a lap to get the a definite diagnosis and the correct treatment which is the right advice and NOT a diagnosis in itself. If I was Sara X I would feel a little hurt and dismissed by your comment. She is reaching out for support and advice from people she hopes will understand some of what she is going through. I don't mean to offend and I am sorry you feel so cross about having Endo, but we all know how it feels too!

Sara-x in reply to 9 years ago

I have simply come here for support and advice as I don't seem to be able to get it from any doctor that I have seen. Today, I went to yet another doctor, and instead of looking for things that could be going wrong, he simply put me on antidepressants and told me to come back when they're done as there is "nothing else I can do".

As far as I was concerned, this site is for people in need of advice and support from people going through similar things, as I've not yet spoken to someone who seems to understand what I am going through. On here, I have found some lovely people who are willing to take time out of their day in order to help someone who is struggling and doesn't know what to do. Whether I have endo or not, I don't know, because I constantly get pushed aside as if there is nothing wrong with me. You tell these other people who are helping that they cannot diagnose me, yet you are saying that I don't have endo, and just PMS instead.... pretty sure that's a diagnosis.

I am only 19 years old and I shouldn't be having to suffer with the pain and emotional instability that I do, it's putting my future on hold simply because I can't even complete a degree which is something I have always wanted from life.

I do apologise if me asking for help off people who care has bothered you.

"Good day", to you.

Bokkie9 years ago

I am not offended at all and I accepted my diagnosis after 30 years of not knowing and would have given anything to have had understanding and support from anyone during that time.

in reply to Bokkie9 years ago

We are all here to support each other. We are not medically trained to diagnose Endo or any other medical condition.

We can however share our experiences of our journey with Endo .

Sara is already seeing a specialist privately and what she needs to do us demand a proper diagnosed and we know you can only get that if you have a laparoscopy.

Best wishes,

Barbara

Bokkie in reply to 9 years ago

Thank you Cuddlybarb, my point exactly! x

Sara-x9 years ago

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.

Bokkie in reply to Sara-x9 years ago

Have you asked about Depo-Provera? It's an injectionable contraceptive which does not require HRT and fools your body into thinking it is pregnant and stops your periods.

Sara-x9 years ago

I don't understand why you are being so harsh about this. Hormones is a massive problem that is involved with this area, and I do have other problems that also contribute to that. Not once have I used my age as an excuse, you're just a lucky one who has managed to get their way at such a young age. I have been endlessly trying to get things sorted for almost 4 years now. Who are you to sit on an online support forum and be rude to people who are in need of some advice? Seriously.

in reply to Sara-x9 years ago

Sara. Please change your GP and get the help you deserve.

Lots of love

Barbara.

in reply to Sara-x9 years ago

Sara, we all are here to support each other. Keep posting and we will all help and support you.

The majority of us are supportive and non judgemental

Bokkie in reply to Sara-x9 years ago

Hi Sara-x, I have been the receiver of a backlash because of the comments I made earlier in support of you but I want you to know that I do not regret my comments one bit. I really felt for you and wanted to show it. I really appreciate the fact that some others have supported my response and hope that considering that there has only been one negative comment to you regarding your questions you will NOT be put off using this forum in the future. Maybe you have got some PMS; I did too, but I also had Endo! We are all in this together and should stick together. I hope that you get the treatment you need very soon. Good luck sweetheart XXXX

9 years ago

Things are obviously very different here in the uk.

Most of us have had endless battles with doctors to take our symptoms seriously. Some ladies on this forum have waited decades for a diagnoses.

Please be kind and sympathetic this is a nice forum where we support and genuinely care about each other

Sara-x in reply to 9 years ago

Thanks Cuddlybard, seems like some people only want to talk down and talk badly to others.

Brownlow in reply to 9 years ago

I absolutely agree with Cuddlybarb that we need to be kind and sympathetic to each other on this forum and treat each other with respect and maturity.

Sara-x, "we", i.e. most of us on this forum, are here to support without judging. I hope you find a way through all this soon.

Sheri269 years ago

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

Bokkie in reply to Sheri269 years ago

Hear hear!!! : ) XX

Alaine19 years ago

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

Sara-x in reply to Alaine19 years ago

I get exactly the same problem with the pain in the lead up to the next injection.. I had the last one today before going back to see the specialist in a few months. I've also been prescribed Citalopram, but was told nothing about them at the time.. Got home, read up on them and refuse to take them. I'm getting really fed up of the NHS.. they're medical efforts involve giving you some tablets just to shut you up :/.

Alaine19 years ago

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

Carrieanne049 years ago

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

Sara-x in reply to Carrieanne049 years ago

Yeah this is pretty much how things had started out for me, with it just getting more frequent and more unbearable. I don't understand why no doctors seem to even think about it as an option seeing as they say it's such a common condition. I do feel a lot better after finding this forum just because I've been able to speak to people going through the same thing. I'm guessing you're waiting on having the surgery?