Feeling confused!

I had my first appt with a gynaecologist yesterday and listed all my symptoms which are : painful heavy periods, constant pain lower left pelvic area, pain on ovulation, lower back pain, shooting pain down my legs, constant nausea and constipation I said I don't feel pain during sex but am often in pain afterwards he said it does not sound like a gynaecological problem! I'm confused because after reading a lot about endometriosis this is what had matched my symptoms the most. I'm not sure what my next step should be as both him and my doctor seem to think living with constant pain is ok and that I should just get on with it! Should I push for a lap he said he can't see the point as he thinks it will be clear he did an internal check I said it hurt when he pressed on the left side but he just said yes but you're not leaping off the bed in pain I did end up in bed most of the night in agony from having him poke around though.

I left having spent hours waiting feeling I had totally wasted my whole morning and being made to feel I really shouldn't have bothered them.

13 Replies

oldestnewest
  • My heart goes out to you it really does!!!! I don't have pain during sex yet I was diagnosed with extensive endo which I had the lap for last week, we are all different and symptoms vary.

    It's time to get angry!!!! Demand a second opinion and if your GP refuses go to another one and don't stop shouting till you are listened too.

    It will be best for you to see a different consultant as I would not trust this idiot anywhere near me.

    Good luck and please update us xxx

  • I am afraid it is a long road to get diagnosed - in my case 29 years - but most ladies have several years of going back and going back and going back to ask for help and tests and scans before they get to have a diagnostic lap. Don't give up. It's easy for Docs to fob you off - but you know when something is clearly not right or normal and it is obviously impacting your quality of life and ability to do things so keep pestering, be brave and bolshie , sit down strike if you have to.

    The difficulty is you usually end up seeing a non endo specialist gynaecologist - they really are for the most part clueless about endo barring what little they have read in text books, so if no luck with the gynae - ask your GP to refer you to an endo specialist gynaecologist not a fertility/obstetric one.

  • Thank you for your replies, I think this time round I may use my private medical insurance and see if that's a better experience.

    I just wish that they would offer an explanation instead of just saying we don't think it's gynaecological say what it could be instead of just expecting that to be an ok resolution I always thought pain was a sign something is not right somewhere but unless it's a text book pain it's obviously ok to live with.

    I know from reading posts on here I will have a long slog ahead and I need to be a bit more assertive which I'm rubbish at but I know I've got to be otherwise I'm going to drive myself mad.

    I do find reading the posts on here very helpful and really appreciate your comments thank you again x x x

  • I'm not sure I can say much more that would be helpful - just be persistent. Your symptoms definitely sound like they could be endo and I'm not sure what they expected to find with an internal examination. You'd be better having an ultrasound (internal) which would at least show up anything big (e.g. Cysts on ovaries).

  • "He said"................. There's one of your problems, a male doctor, who hasn't got a clue about what us women have to go through!! It makes me angry.

    At my Doctors surgery I've noticed that the males are definitely more unsympathetic than the female Dr's, you need to see a female Dr and push for an appointment at the hospital to see a specialist, the Dr can't give you an appointment for a lap, you will need a referral from her to see someone that can.

    Having said the above, the Dr's I've seen at the hospital, the gynaey's, have all been male and extremely good.

    My advice would be to see a female Dr, tell her you've done your research and you are 100% sure you have endo and you need her to refer you to the hospital to be seen by a gynaecologist that is able to send you for a lap, even then it's a 3 mth waiting list.

    Remember an ultrasound scan will not show endo, it's too small, so don't agree to one, push for the lap, let her know that you are determined and will not be palmed off, it's your right, that's what you pay your taxes for. And your living with the pain not her, and you shouldn't have to keep suffering,that's why we have doctors and hospitals.

    I hope you get sorted soon x

  • My symptoms were all gastric symptoms. I had severe low abdominal pain all across my pelvis after ovulation that lasted on and off for around 3 days waking me from sleep. It felt like the pain you get with loose bowels. I had nausea at ovulation and on my period. My periods weren't exactly painful but very very uncomfortable and again IBS like pain. I felt I could never empty bowels properly. Had shooting pains in bum and lady parts. No pain with sex at all and no pain on internal examinations so the gynae lady (one of the consultants minions) sent me away. The gastric pain got worse but was only cyclical so I knew it was gynaecological. I was referred back a 11 months later and the consultant immediately offered me a lap within the month and hey ho it was endometriosis scattered about my pelvis and mainly behind the womb causing all my bowel symptoms. Don't give in xxxxxx

    Hope that helps

  • Definately sounds like endo. Has anyone mentioned the BSGE website so you can look for an endo specialist. Unfortunately even if if you go private you may end up seeing a normal gynae who potentially could fob you off again. The trick is to do your research and go see someone experienced in endo. Go to the website and have a search for both the accredited and provisional endo centres. When you go to your appointment I would be polite but assertive and say that you are interested in a lap as you really feel that what you're experiencing could be endo. Good luck xx

  • I could have written your post myself! All your symptoms are exactly what I experienced. I had to have tests such as a colonoscopy, ultrasound scans, blood tests etc before they agreed to a laparoscopy because my consultant believed it was a bowel problem and not endometriosis. But when they finally opened me up my endo had spread everywhere! It is a bumpy road to go down when trying to get diagnosed, I felt like I was going crazy.

    Please don't give up, stay strong and fight to get seen by specialist. Good luck.

  • Wow I'm feeling much more positive now thank you ladies I had started to think I must have got it totally wrong and what do I know but your right I am the one suffering and need to be more assertive in getting my point across I'm always the one who gives in for an easy life and I can see that that's what will happen with my health if I don't stand up for myself.

    I have been put on the pill by my doc to take back to back for three months to see if that helps, so far it's made no difference (it's only been two weeks though) is it worth waiting to see if it does make a difference or just go back and ask for a lap to be booked straightaway?

    Thanks all for making me feel much better today x

  • The pill may help with your periods but it won't 'dissolve' your endometriosis, if you do have it. I'd say push for a lap x

  • Oh, goodness... I really feel for you. I do. I can TOTALLY empathise - what you are describing sounds almost EXACTLY like the sort of response I got from my old G.P. and my first Gynaecologist. This sort of crass attitude towards women who are clearly in pain, and are trying to seek the correct sort of help and treatment by going to their Doctor, it's just REVOLTING. It makes me really hurt, and angry!

    I was going to say that I cannot believe that a Gynaecologist could sit and listen to you describe all those symptoms, and then say "it's probably not Gynae"! However, I CAN BELIEVE IT, because it's exactly what I was told. I spent YEARS before finally getting an accurate diagnosis of Endo - years during which I was told it was "IBS", it was "stress", it was "normal period pain", it was "in my head"! I had period problems as a teenager that were basically ignored, then things got much worse around 2002 (so in total, I've suffered for about 28/29 years before ever getting a diagnosis!). DON'T LET ANYONE FOB YOU OFF!

    Truth be told, there are probably MANY women on this forum who have been through similar experiences, so you are not alone (small consolation!). It take an average of about 7 years to get a diagnosis of Endo; some of us wait far longer. This is probably because of the lack of understanding of the condition, and the fact that many Doctors lack knowledge. Many Gynaecologists have just basic training, and therefore do not know about Endo in any detail. I suspect that far too many of them feel "out of their depth" when dealing with Endo sufferers, but simply don't admit it (too proud, too vain or too scared!).

    You really do need - AND DESERVE - better care, support and treatment than you are currently getting. Persistence is often necessary to get the message across - and does generally pay off in the end. You have to be stubborn - and organised. Be prepared to think hard about your condition and symptoms, to do your own "research", and to have to stand your ground.

    I am going to send you another reply, in which I have made a list of things that you could try in order to get the matter sorted out. These are the things I had to do, to get to where I am now. Some may work for you, others may not - feel free to look the list over, and take from it whatever is of use. Remember always that you have the support and interest of women on this forum, many of whom have been in a similar situation. Keep us posted.

    I wish you well - as I am sure all the women here do.

    Elaine. x

  • Hi again,

    Here's the second reply I promised you. Please do bear with me, as it's quite a long and detailed response. However there just may be something of use in there. I do hope so. If not, please do not feel obliged to act on any of my suggestions - do your own thing. Just know that you are not alone, and women on this site are empathizing, and crossing their fingers for you...

    Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

    By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

    For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

    1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.

    2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists and your area - see list of links below) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

    3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

    4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

    5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings as well, to see if they occur around your periods - this may show if it is your Endo/hormones that cause them, or if it perhaps medication causing mood alterations.

    6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

    7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. If you are studying, Universities and Colleges often have Student Support Departments where disabled students and students with long term health problems can get advice and assistance. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

    8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort is a natural remedy to help with mood swings. Echinacea can boost a sluggish immune system. However, check out any homeopathic remedy before you use it, and make sure it does not react badly with prescription medication.

    Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

    I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail again, or keep regularly in touch, feel free.

    Take care,

    Elaine Ellis.

    P.S. Just a few useful contacts:

    1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.

    2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

    3. Endometriosis diet - endo-resolved.com/diet....

    4. Endo specialists UK by area - bsge.org.uk/ec-BSGE-acc...

    HOPE some of this helps you. Best wishes and good luck!

  • Demand a second opinion, I had a pelvic scan at my GP surgery which showed up an abnormal thick womb lining and polyps. I kept on going back to my GP constantly until he suggested a pelvic scan they I got referred to a gynaecologist. You know the pain you are suffering don't give up

You may also like...