I would like to share my story and current situation via Health Unlocked in order to speak with like minded individuals who might be experiencing the same condition. Thank you in advance for taking the time to read my post. I am a new user.

Back history:

I had extremely painful periods all of my life. I had a scan which showed a 10cm ovarian cyst. I I had a laparoscopy 2 years ago to remove it. The gynae drained it and the report stated she had removed small spots of endo also and found filmy adhesions on my bowel.

After lap I was discharged, placed on a hormone injection- which made me extremely ill, so I was placed on Norethisterone. It took me 3 / 4 weeks after my op before I could even get out of bed and walk.

Ever since my op I have been in constant pain for 2 years. I have had severe abdo pain, upper and lower with no respite. Smear test and gyane test are extremely painful, sex is the same. I have a tight contracting sensation outside the vaginal wall / near perianal area when aroused. For the last year I have pain in an upward motion just when I am finishing urinating. It doesn’t seem to go past my belly button and seems not to be inside the urethra but more on top. I have involuntary arousal from my cliterous that is ruining my life and seems to be persistent and constant. When I push the area around the belly button and below I get a sharp pain on the area and down below. I feel as if the centre line from belly button to cliterous is being pulled upwards and is very tight. When I lean backwards I have a sharp pain down below. When I sit up in the bath the area just before the top of the pelvis feels like there is a foreign object present / I am pressing on something.

The communication between my GP and I has broken down and it is obvious that the duty of care is no longer present. It is highly embarrassing divulging such information and I receive no help. I am at a loss as to what to do, as no one understands, nor can appreciate what it is I am going though and physically feeling.

•Can anyone offer any words of advice

•possible diagnosis,

•useful contact information of well learned individuals within any relevant field,

•share their own stories please.

Many thanks

4 Replies

  • Well you do have a choice to change GP and you should certainly do that asap.

    Next when was your last scan? Cysts can regrow and very quickly - they can simply refill again of they were ony drained. New ones can form at any time.

    So some of your symptoms could easily be explained by the presence of a cyst.

    If the scan shows no cysts anywhere they usually are - or hidden in the POD (pouch of douglas) between the bowel and the back of the vagina and uterus, then some of your symptoms could simply be a case of gluey adhesions which are sticking ligaments and organs together with a supergluey strength that should not be stuck together.

    If you have adhesions and you are bound to have some after any surgery - then this would explain how moving in one way can tug at something somewhere else entirely.

    There is no cure for adhesion - they continue to grow because they are your body's way of protecting itself from future harm, but they can be cut right back freeing up stuck organs which can then have barriers placed in the way so next time adhesions grow they hit the buffer and stick to that rather than the neighbouring organs and ligaments. It is not 100% effective for ever - it buys you quite a bit more time before the adhesions become a nuisance and again my need a clean up surgery.

    You need to get a new and understanding GP - perhaps a female, one with a special interest in women's health and please do not get embarrased talking about it - one thing I have found after all these years is that the more open you are about talking about these things the less it worries you next time. It does get easier and easier. It does also take auite a bit of bravery to pluck up the courage - so I am not underestimating how hard this can be - I have been through it myself as have most of the ladies on this forum. None of us started out flippantly discussing poop, pee, periods, pain and problems down below.

    It's just that the longer we suffer battling endo and every weird thing it can do to us- the more we realise that most of us are in the same boat and we all have similar stories and similar fears and concerns and experiences. It does get easier to talk about not only on the forum but also in real life too. Doctors are dealing with these sorts of issues all day every day - they are also no longer going to have any issues of squeemishness about it because they are so used to it.

    Having a kindly supportive undestanding GP makes the absolute world of difference to your journey with endo.

    Endo and adhesions too and cysts can all press on nerves causing pains and sending haywire signals else where in the body - usually of the pain receptor sort but there is no reason at all why the nerves to the clitoral area are excluded - they have to communicate with the brain via the many of the shared neural pathways as other parts of the body.

    I would not say your lap op has gone wrong - it just was not enough. You were still left with endo - and that has had time to be active again - it also leaves you with adhesions again there is nothing to be done but next time have them cut right back where they are a problem.

    You can get adhesions from any trauma to the tummy - not just surgery. Falling off a log, riding a bike, a child bashing in to you or jumping on your tummy. Any trauma including endo can cause adhesions to start growing.

    What is obvious is that your gynae surgeon either did not have the expertise or the possible the time booked in theatre to get everything done in that op that needed to be done.

    May not be their fault - but that as may be. The point is now you are still suffering and you do need to be referred to an endo expert team to investigate if more surgery is required and the type require, will you need an endo bowel or bladder specialist surgeon or both on the surgical team?

    Adhesions can grow inside and outside the vagina and cervix - they can act like a corset or girdle holding it in one position and restricting any attempts to stretch it or move it without cause tears to the adhesions and considerable pain for you.

    Endo bleeds collect in the POD space and get stuck there leading to big lumps of coagulated old blood that can push either in to the bowel obstructing it or in to the vagina too. As can cysts which fall down there.

    You need to be brave and be your own warrior and push for the treatment you need to get this investigated and to have the necessary surgery.

    I'm afraid the medical profession will not hear silence or do anything about it. You have to roar loudly to be heard and to get what you need. Even if it is against your better nature to be a pushy patient, sometimes you just have to be brave and battle to get help.

    Get a GP

    Get a scan to check for cyst activity

    Get a referal to a specialis endo gynae team

    This web page lists the accredited endo centres in the UK

    Don't expect miraculous cures for everything - but there will certainly be quite a bit they can do to improve things for you and give you back some quality of life.

    Very best of Luck.

  • I totally agree with the very sound advice Impatient has given you. The more well informed you are the better the result with the GP, tell them you want a referral to a endo specialist and they cannot really refuse. I went and saw 3 different GPs within 2 weeks because I felt I was being fobbed off and in the end I just told them I'd been on the Endometriosis Uk website and had all the symptoms and wanted to see a specialist. One internal examination later and I got my referral. Once you get a referral write down your symptoms and already have the diary to show them, this will stop them sending you away to keep track of your symptoms. Don't be intimidated by Drs or Consultants as you know your body better than they do. Have what you want to say written down if you are worried you will forget. If it's a different consultant to the one who did your first op take any notes or descriptions of what the symptoms were before and after, this may help them join any missing links between the last procedure and what you need doing now. Good luck

  • I always lay out my expectations and insist on a referral to a gynaecologist. Eventually, after harassing them, doctors give in. Initially it took me 3 years. But now I don't even make it something for the doctor and just say I need to see the gynae again. Just make them see that if they agree you won't be their problem anymore. It's horrible to nag but do it when you're in pain and they can hear the desperation in your voice. And you're always in pain so you'll always be ringing them.

  • Thank you Impatient, Claire 77 and Endo Pains for taking the time to reply to my post. I appreciate it immensely! I was overwhelmed that complete strangers would take the time to impart their knowledge, advice, support and share their personal experiences to a complete stranger. It is a stark contrast to the care that is bestowed upon me by my GP / Health care professionals from all sectors of the industry.

    Please find elaborations on points/ questions raised


    Yes I do have another cyst present in the same place. The Surgeon did not take away the cyst wall. Yes, it did grow back quite quickly. However I was informed that it was too small to cause concern. My 2nd opinion gynaecologist also wondered why my surgeon only drained it and she said that would not have been her preferred method of removal. Lol my current GP is female. The initial GP I had within the same practice was however male. Because it had become evident that the communication had broken down between DR and patient I moved DR’s. To cut a long story short I was referred to the Gastro specialists to help diagnose the upper abdominal pain and as the MRI did not show up anything, he has said that I would benefit from a psychiatric evaluation LOL. I have to write “LOL” because I had never heard such a ridiculous conclusion. Again, so I do not bore the forum readers I have condensed my experience down a great deal. Oh yes!! I am definitely my own warrior!! I have to be because the health care system is very happy to leave me suffering. With my GP it is all politics. Money and funding!! I have already been verbally told that if my current specialist does not find anything that I should consider the evaluation and she cannot continue to send me to people.

    Claire 77:

    I am like Shakespeare lol. I have a note pad on me at every consultation. I have symptoms written down, I send copies to the DR’’s and when I have received new information from the DR’s, I proceed to do some research, and go back in with questions and I am ready with answers should they try to fob me off.

    Endo Pains:

    Sometimes I find that DR’s are so nonchalant when it comes to appreciating a patient’s pain. It’s almost as if the pain is less noteworthy because they cannot see blood and wounds.

    Once again….MANY THANKS!!!

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