Don't know what to do next?

Hi everyone. I was diagnosed almost 2 years ago when I was 18 after my first lap and although the surgeon said the endo was mild I was in a lot of pain! After the lap the pain returned about 2 months later, I have been on 7 different pills now and I feel as though that's all the gynaecologist really says to me.. "try another pill".. My symptoms have worsened over the last 2 or 3 months and I want another laparoscopy but I don't know if I can ask for one? I feel as though it helped me a lot with pain the last time and I would maybe benefit? Please can I have some advice :(

6 Replies

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  • Hi robynjane I share your same frustrations I also have endo and suffer with bad pain that's uncontrolled without pain meds. I've just had my 2nd lap to remove endo and adhesions that was a week ago and my pains already returned. Unfortunately this is the problem with endo it can quite easily return in many people although you may be different. It's very hard to accept this for me as you expect surgery to have an impact. For me now it's pain management and finding ways to help me cope. It's not ideal but I'm sure if I continue with these appointments I may find some relief.

  • Thanks for the reply Laura_w, it really helps to know that there are other people in my position. Ive got an appointment with my GP next week to talk things through but I just feel as though it is never ending.

  • I know exactly how you feel. It took me 2 years to get diagnosed and I know for some women it's much longer. It's being a tough couple of years very stressful and emotional, my life has completely changed. It's something I have to live with so doing everything in my power I possibly can. It's difficult but remain positive and try not to let it get you down. I wish you all the luck with your lap xx

  • Would the mirena help? Have you tried it?

    You could ask to try it (you have the right to ask for it to be inserted under anaesthetic) and I think surely if they did that they could give you a lap at the same time. You could argue that you'd like any new growth removed and to try the mirena to prevent further progression (or something like that).

  • Hi - I understand how you feel about the pills. At the start of my journey I did take the pill back to back but unfortunately developed blood pressure so that was it for me re pills - I was not up for the other drugs having looked at the fors and against but that was my own personal preference.

    These drugs are at best a temporary solution and may come along with side effects at an already difficult time. . . the question is what next as the chemical menopause pills are only recommended for six months. The contraceptive pill mimicking pregnancy can be taken for a lot longer and is good if it helps but it will only do so while being taken. Neither of these drugs will eradicate endo.

    GPs tend to lump endo in with gynae when in fact it is more of a separate medical genre in itself being that it can affect the whole peritoneal cavity, or should be. It often gets confused with Adenomyosis too which is a separate condition and is gynae. Hence we get sent off in the first instance to the local general gynae team who cover all manner of gynae conditions and are not necessarily specialists in endometriosis. It will of course have been part of their general medical training and some may have taken a particular interest in it. Those that do tend to go on to gain additional expertise and become known as an Endometriosis consultant in addition to being an OBS GYN.

    It is usually the general gynae consultants who go for drug treatment. The drug companies have marketed these as a diagnostic tool with the rationale that, if a person's pain improves then it must be endometriosis. Dr David Redwine (now retired USA endo specialist) has said that this is flawed and cessation of periods can relieve other gynae conditions, such as adenomyosis or prostaglandin pain etc. The only way to accurately diagnose peritoneal endo is to take a look. So an Endo Consultant will not generally use drugs as a first means of proving endo, or of treating it in fact.

    An endo specialist consultant will usually prefer to remove endo by excision rather than just temporarily subdue it. There must be some circumstances where it is beneficial to just temporarily subdue it as opposed to removing it but it is hard to think of many. Some consultants will say they recommend these drugs to shrink endo to make surgery easier for them/safer for you. So you have to go through these hormonal ups and downs. One of the Endo consultants says that this is not a practice he would recommend as the surgeon is best off being able to see the true extent of endo at the time of the operation in order to be able to remove it effectively. If it is subdued and not visible, it may not be removed but may spring back up over time. Just something to consider.

    As for removal of endo by surgery - Laparoscopy is merely the name given to the method of operation (i.e. keyhole surgery) as opposed to Laparotomy which is a lateral incision. Again the endo expert surgeons say that laparoscopy is the best way to treat endo as the pelvic cavity can be viewed by magnification so it is easier to spot and remove endo. A suitably skilled laparascopic surgeon can handle removal of endo in that manner and only revert to wide incision if unforeseen complications very rarely arise during surgery. They don't start out intending to do laparotomy. I would question a surgeon setting out to treat it with a wide incision. Your recovery will also be a far less painful experience!

    The key thing to successful surgery is that, it is the quality and type of surgical work that is carried out during a laparoscopy that will make all the difference to the overall outcome. This is why there are so many differences in after op experiences and 'return' of endo, because different levels of endo surgery have been carried out.

    General gynaes will tend to offer laser treatment. At a rudimentary level, Laser is like weeding a garden and cutting down the weeds above the surface. This is a burn and will form scar tissue. If any endo is left at the deeper layer it cannot therefore re-emerge at this site but there is a possibility that the roots will re-emerge elsewhere overtime. It may be seen as the endo coming back or new endo but in reality it is most likely just the same endo that was not fully removed. It can of course give some relief until and unless it does reappear.

    Important to check that there is a medical reason for offering laser and that this is not simply because they do not themselves do excision surgery! Excision having the better outcome. Ask for an onwards referral if that is the case.

    Then there is excision surgery. Again there are exceptions but many general gynaes seem to do 'patch excsion' where they remove only the endo that can be seen and easily removed. This can bring relief. However, unless it was ALL removed, it is this that leads to the misconception that endo aways comes back. The 3 eminent endo surgeons agree that this is simply because it was never ALL removed in the first place and can lead to multiple surgeries.

    The next type of excision surgery is "wide excision", often mistaken for 'Total Peritoneal Excision but they are not the same. Wide excision is where the consultant has more experience and expertise at removing difficult endo and so more widely excises it. However, again, there can be some left behind. Good outcome for a longer period of time though is more likely. This calibre of surgeon is more likely to be expert at spotting it too as not all surgeons are experienced to be able to recognise endo in all of its guises either. Endo can also be unseen under the surface.

    Then there is Total Peritoneal Excision where the whole lining of the peritoneal cavity is removed, thus separating organs that have become stuck and removing ALL endo seen and as yet unseen. The peritoneal lining renews itself on healing and is clean of endo. This has a much higher chance of long term relief from endo.

    As those of us who have been around for a time know, there is only one surgeon in the world who does TPE. Luckily enough he is in the UK but unfortunately, after many years doing both NHS and private work, now is coming up to the later years of his career and now only does private work - also due to frustration at lack of theatre resource for what can be quite lengthy and complex ops.

    Extremely important to make sure the consultant you see is a specialist in endo surgery. The results will be in accordance with the level of experience and skill of the surgeon. Always check their background and experience out if possible. It isn't always the case that the GP has referred you to the most suitable team as that will not become clear until diagnosis and the extent of it is known. Endo UK publishes a list of those centres which have been accredited for treatment of Endometriosis.

    Best wishes

    Frances x

  • That was very informative Stevieflip, Kudos for sharing that.

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