Hi ladies- advice needed please x

Hi Ladies, so I haven't posted in a very long time so this will be a very long post! I previously suspected I had endo and had a lap at the beginning of the year and told I had PID (pelvic inflammatory disease) which I was treated for at the time with a course of antibiotics. The following is what was on my discharge form from the hospital:

Primary/ Main diagnosis

Chronic Pelvic Inflammatory Disease

Laproscopy findings- uterus retroverted, right ovary and right tube densely adherent to the pelvic side wall and POD

Bowel adherent to the pelvic wall

Left Tube and ovary normal

Dye test positive on both the sides with spill from both tubes

I wasn't entirley convinced this diagonis was correct along with my GP who also thought my gynae. was fobbing me off. My consultant basically said there was nothing more she could do for me and discharged me from her care. This made me feel like everything was in my head and I felt a bit stupid so I stopped pursuing it.

I was able to pain manage my symptoms with a number of medications prescribed by my doctor; mefenamic acid, tranexamic acid, co-coaldamol, mebeverine and amtriptyline to which I take a total of 16 tablets a day when I'm on my period! Which makes me feel like a zombie for the duration!!

My symptoms seemed to calm down for a couple of months and the medication does work but recently they have been flaring up again. Can endo. come and go? My symptoms are as followed; extremely painful heavy periods, bowel habits change and painful when on period, I experience painful sex when it's deep penetrative and certain positions, fatigue and lack of energy, occassionally lower back and hip pain before and during my period.

I also use to suffer from irregular periods but have now regulated to 4-5 weeks since last December. I still haven't been able to conceive after being off contraception for 3 and a half years. My husband has had a semen analysis and everything came back normal. Would if be worth going private to see a specialist to pursue my symptoms and findings from the lap? My consultant did say nothing could be done about my adhesions but surely I can't be left in this state?

Also I had an ultrasound nearly 2 years ago which showed cysts on my left ovary but they couldn't diagnosis me with PCOS as my bloods were fine although I had high prolactin every now and then and bloods were showing I didn't ovulate.

I'm guessing I just want some advice to where do I go from here? I've put it on hold for a while because I became a little obsessed with it and it caused me a lot of stress but it's always in the back of my mind.

I would appreciate any advice ladies xx

11 Replies

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  • It definitely sounds like Endo.

    I had an op in Feb to remove stage 5 Endo and the only reason I got diagnosed is because I've always had heavy, painful periods but thought it was normal. Pain became so bad I thought I had appendicitis so went to my GP. She sent off for an urgent ultrasound and the found lesions all around my womb and bowel.

    I'd ask your GP to re-refer you and maybe choose a different hospital or consultant, sounds like you old gynae isn't willing to consider Endo.

    The fact you said you have adhesions suggests the gynae may have considered Endo but maybe it's not far enough advanced to consider surgery right away but they should have considered hormone treatment to slow progression at least.

    Go back and keep pushing for treatment. Explain to the GP your symptoms line up with Endo and you want referring to a different gynae.

    Hope this helps you.

  • Thank you for your reply. I'm not a doctor but all my symptoms seem to add up to endo. Especially to have the adhesions as well but the consultant said it was due to an untreated infection. I had no symptoms what so ever to suspect I had any kind of infection at all and for it to cause so much damage with out me even realising seems a bit odd to me. My husband is in the forces and away until the end of October so i'll get the ball rolling when he gets back. It does help that I work at a surgery so I have a really good relationship with my GP. I just feel a bit bad that I want a second opinion as I said I'm not an expert but I did only see a normal obs. & gynae. Consultant x

  • Hi allshia as a retired theatre nurse in gynae & obs I would insist on a second opinion at your nearest big City Hospital no matter how far away it is... We have a system in UK called Choose & Book, WE choose where we want to be treated and the g.p. BOOKS. At my old hospital in Greater Manch ladies came from up to 80 miles away for treatment. Some local hospitals just don,t have the funding to buy equipment that the big city hospitals have and so cannot give you a clearer diagnosis. The bigger hospital have more funding and very specialised Consultants. Give it a try don,t suffer.

  • Unfortunately not the case for ladies in Scotland & Wales and parts of Ireland (think NI) x

  • I went to Peterborough City Hospital. I think i'm going to go down the private route. One of the lovely ladiea on here recommended I go to see a specialist at the Oxford Gynaecology & pelvic floor centre. I don't mind paying for the initial appointment then if further investigations need to be done I should be able to get a referral on the NHS x

  • I am sorry you didn,t get the attention you needed in your area,is it possible you didn.t see the specialist with Endo Experience? sometimes in out patients you might be in a gynae clinic but your notes are not put with the doctor you need to see, most City Hospitals are teaching hospitals and I would ask your g.p to ensure he books you with that special doctor before you spend a fortune in the private sector-most of whom might use the nhs facilities and you go back where you went initially! If you do choose to go to Oxford I sincerely hope you get the right doctor, come back to the Forum and let us know how you get on and hopefully some very decent relief of your suffering.

  • caz-54 I don't think you can know about the BSGE accredited endo centres where the 'special' doctors are, but we don't refer to them as that. They are BSGE accredited excision surgeons. We have known about these since 2009. Oxford is an NHS BSGE endo centre and Allyshia is already aware that if she chooses to go there for one initial private consulation she will then be referred to the NHS list at the centre. If you wish to look at the centre in question on the BSGE list you will be assured that she will be seeing a surgeon who has done a minimum of 2 years' advanced excision training that your friends at the teaching hospitals have not.

  • Going to a big City hospital is definitely not recommended for a second opinion Allyshia unless they happen to have a BSGE accredited endo centre.

    The European (ESHRE) guidelines that underpin NHS treatment are very clear in what symptoms should suggest endo to a doctor and you have them - 'extremely painful heavy periods, bowel habits change and painful when on period, I experience painful sex when it's deep penetrative and certain positions, fatigue and lack of energy, occasionally lower back and hip pain before and during my period.'

    You have all the symptoms suggestive of endo behind the uterus affecting the bowel - retroverted uterus, bowel problems, adhesions involving the PO and pain with sex. Gynaecologists in general hospitals often just diagnose this as IBS and you need to avoid this at all costs. The last thing you want is yet someone else telling you there is nothing wrong.

    As you live in England you do have access to see whoever you want as long as endo is 'suspected' and any doctor once presented with the ESHRE guidelines cannot deny that it is. There is no such thing anymore as Choose and Book - it is now called the NHS E-referral service.

    I have now set up a facebook group (link below) and if you want to join we can lead you carefully through the process to get to appropriate care. x

    facebook.com/groups/1148144...

  • Hi, I had similar problems with an Nhs Gynae fobbing me off wouldn't even give me a Laproscopy saying I couldn't possibly have endo although I have the symptoms you are describing and more. I felt discouraged and upset too for a while til it got so bad I went private, my consultant is fantastic I had a lap in January found extensive endo which was excised had an MRI after I wasn't feeling any better and was having bowel problems and found endo all the way up my rectalvaginal wall now looking at further surgery as medications not helping. Always trust your instincts I could not encourage you enough to go private it will save you a lot of time,suffering and probably fertility in the long run it certainly has for me.

  • I'm so sorry to hear that you are being messed about and fobbed off. This shouldn't be happening to people in this day and age - but sadly, it seems to be a common experience for women who may have, or do have, Endo.

    I am highly inclined to agree with some of the responses you have already received. Your symptoms DO sound as if there is a high possibility of your having Endo. Indeed, some of the symptoms that you report experiencing - including changes in bowel habits, deep pain on intercourse, fatigue, lower back, and hip pain - can all be suggestive of Endometriosis. The fact that scans have shown cysts on your ovaries again leads me to suspect that Endo should be considered as the cause of your problems.

    Endometriosis is an illness that seems to cause a lot of trouble - particularly because some GPs and also Gynaecologists appear to be very lacking in knowledge about it. As a result, women are often left to suffer with symptoms of Endo for years before it is correctly identified and treated. The Endo UK charity suggest that at present, women wait on average 5 years or more to get an accurate diagnosis and treatment of Endo. Personally, I think that this is due to a combination of factors which include general ignorance about the illness, plus the fact that many doctors mistake symptoms of Endo for symptoms of other illnesses, such as PCOS, Pelvic Inflammatory Disorder, IBS, Crohns... Because Endo has a wide variety of symptoms (which often depend upon where in the body the Endo is growing), it can be confused with other illnesses.

    In your case, I do NOT think that Endo can be ruled out. Perhaps you could try keeping a diary of all your symptoms - in which you list when and where they occur, plus how they make you feel. Also, keep a record of all treatments you try, and their side-effects, in which you detail whether the treatment is effective, or not. Take this information to ALL appointments with you, as it may shed light on the nature of your illness, or it may identify patterns in your symptoms that help identify the type of illness you have. I would further suggest that you book an urgent appointment with your GP, in which you ought to request referral for a SECOND OPINION, because it may be that your current Gynae is wrong.

    If you are being treated by a basic Gynae, then it could be that they don't have the expertise to deal with Endo. That is why many women on this site (including myself) who have Endo seek referral to a specialist centre. For information on specialist centres, and a list of them, see...

    bsge.org.uk/centre

    To better understand your symptoms, and whether they could be Endo related, it's maybe useful to take a look at the following, which is a web page listing Endo symptoms according to location in the body...

    endo-resolved.com/symptoms....

    I have had 4 lap surgeries to deal with Endo, which was stage 4 according to American Reproductive Society staging criteria (the most serious stage - stage 5 that somebody wrote about does not exist), and included Deep Infiltrating Endometriosis growing INSIDE my uterosacral ligaments. Deep Endo can be really problematic and often causes more symptoms, or more severe symptoms than usual - it is frequently associated with bladder and bowel symptoms as it grows in areas near these structures (such as the uterosacral ligaments and pouch of Douglas areas). Different types of Endo necessitate different types of treatment - superficial Endo can be lasered or heat treated (diathermy), whilst Deep Endo must always be cut out (excised).

    It seems to me that it might be a good idea for you to seek out a second opinion, and maybe referral to a specialist centre. You know your own body best, and should also know your symptoms well. So, trust your instincts! If something STILL does not feel right, then it is best for you to get it checked out. Endo does usually show up during lap surgery - that is the definitive way of finding it. I really do think that you ought to be asking why it is that your surgery showed you had adhesions, and your ovary was stuck to your pelvic wall. I'd also be asking what the cysts on your ovaries are believed to be (if not PCOS) because they might be Endo "chocolate cysts". Endo can cause adhesions and cysts, so it seems a probable cause.

    Time to get to the bottom of all this!

    Good luck. E. x

  • Thank you all for your replies. I really do appreciate all your advice and responses.

    I had a bit of a drama yesterday when I was at work. I'm actually on my period now and suffering really bad. I got out my car as I arrived to work and felt this huge pressure down below and pain in my stomach. I went to the toilet and on my sanitary towel was this huge bloody/tissue clot. I went in to panic mode as I've never experience this before and I didn't have a proper period last month just one day of spotting and no pain. I automatically thought I was having a miscarriage! Luckily I work at a GP surgery so the duty doctor saw me straight away and I was able to put what ever it was in to a specimen jar. She reassured me it was normal but we then discussed how things were and she's decided to refer me for a fertility referral which should cover all bases & more investigations. I'm still going to pursue the private referral with a specialist but also going to take the NHS fertility referral as it may not be just down to endometriosis why I haven't conceived for 3 & a half years.

    I'm really struggling this month. I'm in so much pain which isn't shifting with medication. Work keep trying to send me home but I've kind of accepted this is what happens to me when I'm on my period and I should just get on with it. Sometimes sitting around doing nothing makes it worse xx

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