Last week I had the pleasure of attending a Bristol Endometriosis UK support group meeting where the group leaders had arranged a Q&A session with the endometriosis team from St Michael’s Hospital in Bristol. St Michael’s is one of the 30 BSGE accredited endometriosis hospitals, which works specifically on women with endometriosis and support them and their partners with every aspect of the disease using a cross-discipline team.
It was a really interesting evening, the group was supportive and informative, and it was great to be in a specialist endometriosis centre with all the support that location offers. I thought you’d all benefit from reading the information shared at this event.
I’ve made the notes where I can, but I wasn’t able to hear some of what was discussed. So with that in mind, this update doesn’t totally represent the views of the St Michael team or the audience. I have had to paraphrase some of what they said. Some of the questions asked, weren’t actually questions, so I’ve taken a little poetic licence to make them questions so they make sense to you.
Like anything you read online everything is best discussed with your doctor and your consultant as they can see your medical history and your case file, and what may or may not help you.
With all of that in mind, here’s what we heard.
Introductions and getting started
We started off with an introduction to Endometriosis UK and the fantastic work that the charity does. The support group meeting that I attended was run by the Bristol support group and was a combined meeting between the Bristol, Somerset and Cheltenham endometriosis support groups. There are 140 members of the Bristol support group mailing list. With approximately 40 members of the various groups in attendance.
They get a number of different visitors come to speak to the group (such as nutritionists, acupuncturists, yoga teachers etc) and this evening was the latest in this line of speakers.
Introduction to each of the speakers
Each of the members of the group spoke to us about their role and what they did at the hospital. As they work for an specialised endometriosis centre to gain this specialist status each of the team had to undertake specialist training in order to work at St Michael’s.
The team at St Michael’s look after all aspects of pain, so to be an accredited centre, they must have at least one of the following:
- Specialist nurse
- Colorectal surgeon
- Pain management specialist (and a pain clinic)
The idea is to have members of the team working together to improve the symptoms of the patient, this is called “whole person care”.
I have a number of bowel issues, I was diagnosed with endometriosis last year. When I mentioned it to my doctor they said it might be Crohn’s disease, but could this be caused by endometriosis?
Certainly likely, but hard to say, very good question. You can certainly have both, but they are separate diseases that need to be treated separately.
The symptoms of endometriosis on the bowel are:
- pain when you need to defecate
- severe pain when you need to pass solids
This can happen anytime, but particularly on or around your period. Bleeding when you defecate is a rare. This is more likely to be something else, (for someone who is otherwise healthy it could be piles) but either way it’s best to get it checked out.
There are lots of other common things to rule out too, for example anal fissures is a pain in the rectum when passing stools. It can feel like you’re passing razor blades. Very common (and it’s not dangerous) but extremely painful. This symptom isn’t related to endometriosis.
Following surgical treatment for endometriosis, what should I do next?
We’d focus on reducing your symptoms, and we’d ask to see you four to eight weeks after your surgery to discuss next steps with you and see how you’re getting on. Your surgeon will use this appointment to followup on your surgery and check things are progressing well.
I was discharged from hospital with no discharge letter and the surgeon tried to talk to me when I was still coming around from surgery, What do I do? Because I’m still exhausted many weeks after my operation. Should I exercise?
Be normal. Go back to work when you feel ready. Do any exercise that you feel comfortable doing after you’re recovered adequately from your surgery. It can take up to three months at least to really feel the benefits of your operation. You’ll only have a few incisions viewable from the outside, but you’ll have had quite major surgery internally that can’t be seen and it’ll take your body extra time to recover. It can take much longer than you think until you feel 100% again.
How do I keep endometriosis at bay?
You’ll never be cured of endometriosis, or at least clear it’s symptoms totally (unless perhaps you have your ovaries removed or go through the natural menopause). We’d put you on hormones to keep the endometriosis at bay following surgery. However it can come back (up to two to five years later) if we don’t do this.
How can I still have endometriosis when it’s been removed?
It can still be active. And you may still have pain there. The pain may not remain if we stop your periods, but that doesn’t mean that there’s nothing there still hurting you.
There could be a number of reasons, which is hard to say without seeing your cases notes. If you had adhesions (your organs in that part of your body sticking together, including your bowels, bladder, uterus, ovaries etc.) We’d focus on relieving pain from that first by freeing up the organs and then remove/treat the endometriosis.
Surgical scarring is possible too, any surgery makes this possible. Surgery can also cause pain itself, operations can scar tissue and that in itself can cause you pain. So it’s tough to treat, we can can’t always prevent pain, but we do our best.
My advice would be to see a gynaecologist. If your GP has refused to refer you try again, or see someone else. You could ask for an MRI which might be able to show you scar tissue or adhesions.
I received a letter to say that endometriosis was found on my colorectal wall – does this involve my bowel?
It may do. Endometriosis can make it stick to bowel. It’s not the most helpful phrase your doctor has used there, because it’s the space behind your womb and ovaries that might be causing you symptoms, it’s a bit like a gutter and colorectal wall isn’t a name I’m familiar with, it could refer to a lot of possible areas that are causing your symptoms.
What’s the pouch of douglas?
The pouch of douglas is something else. Its the extra bit of the peritoneal cavity, the bottom of which is the pelvic floor. Think of it like a plastic big in shape. It’s the space between your womb and bowel. If you have endometriosis there the symptoms will be:
- pain during and before bladder movements
- pain with sex (pain quite high up, in reality behind rectum and ovary).
What does my consultant mean by superficial “ulcers” being widespread inside of me?
In my opinion your doctor incorrectly described them as ulcers. I think this is because doctors try to use language to help their patients understand, but it’s not always helpful, which is probably why you weren’t able to find information about it online. We treat what we can see, where we can see it.
What about “nerve damage”?
Once you’ve had pain in an area for a long time, the body starts to heal up, but the pain still exists. You’ve fixed the problem but this doesn’t always make your pain die down. This is because your body isn’t hard wired like a computer is. Sometimes you fix a problem, but your nerves remember the problem.
Will nerve damage get better?
It will normally settle over time. I can’t give an estimate on how long that will take. It’s hard to squash pain, when we experience pain it makes us afraid, makes us less likely to do whatever it was that caused us the pain. This is a safety mechanism from your body. Chronic pain is no longer a useful pain message, your body’s pain system isn’t responding to your best interests.
Should I have to fight to get a referral to my consultant? Do you have rights to have for multiple second opinions?
If you’re not happy, you absolutely have the right to ask for another opinion. A good, active doctor working in your best interest will be okay with this. Some doctors think they’re right all the time, and we as patients trust them and think they’re right too.
Life and periods are the two things you should be in charge of. If something is not right I’m always happy for my patients to ask for a second opinion, I don’t take it personally. No one doctor has all the answers – you’re the one’s living with it after all. You have the right to ask for many people to take a look at you want, but at some stage you may need to realise that if many doctors have told you the same thing independently, then it might be time to listen to that view, or try to approach what you’re trying to do in another way.
Can a second opinion be truly independent?
Yes. I know that’s easy for me to say, but you can see many people as you want (within reason). There is a push nationally to reduce referrals and reduce followups with the current climate in the NHS, but do keep asking for referrals if you need them.
Are our doctors honest and unprejudiced in our referral letters?
Most of the referral letters we receive are factual letters filled with information. They are very factual, there’s no room for judgement. To be honest doctors are so busy it’s rare than you ever get more than “this is my patient” and a brief outline of the help needed. You can even see letters with a simple two or three line request (that they’ve typed up very quickly). If you’re not sure, ask for copies of them or ask for your notes.
Is it possible that you can have endometriosis effecting the diaphragm when you no longer have active cycles?
It’s unlikely, but certainly possible especially when the cycles had been stopped with medication rather than the menopause or ovaries being removed.
If I saw someone with a tiny spot of endometriosis on the diaphragm I’d remove it. Only way to know for sure would be to have surgery and look. Of course knowing that breathing is painful makes it harder to relax, can make it worse. You should avoid surgery if you can. If you can live with the symptoms do so, but if it’s effecting your breathing or causing serious pain I would look to get it treated. It may be worth asking for an upper abdominal MRI scan to shed light on what this might be before surgery.
What are the risks to taking the contraceptive pill long term with no breaks?
Safe to do. They only mention having a weeks break to bleed so that you can be certain you are not pregnant. You can take these long term with no adverse effects. This is a good treatment for endometriosis because it reduces the amount you bleed by keeping the womb lining thin. This helps you avoid the knife as surgery has risks, and one of them is can causing more endometriosis to spread and surgery alone doesn’t mean the end of your symptoms.
What are the long term side effects of depo provera?
Works in the same way as the pill (only it’s an injection rather than a tablet). It’s a treatment that works like pregnancy, makes the womb lining much lighter, so it’s another thing to try.
Does it effect fertility?
No, it’s okay.
Have you got a view on alternative therapy, or organic diets?
Seek on a registered nutritionist. You’ll always do better by seeking out professional people. There are only two alternative therapies offered on the NHS (acupuncture and TENS). We need a lot of good, imperical evidence to offer it through the NHS. That’s not to mean that other treatments aren’t successful. Just that they are not always the sorts of thing that can stand up consistently in clinical trials. Bottom line, if it works for you – great – just be mindful of the costs, or a lot of money up front. Be careful of people promising cures.
Is it normal for me to have looseness in my bowels and toilet urgency with endometriosis treatment?
Well yes, but only in so much that endometriosis treatment causes a lot of hormonal changes, so this is normal yes.
What are TENS machines?
A TENS machine is a battery operated machine with sticky pads. There’s good science behind it. It works on the basis of calming the pain by working on the electrical signal that alerts you about you being in pain to offer you prolonged relief. Similar to the pain relief you get when you use one during pregnancy, only we think their usage is far greater than that.
We teach you how to use it properly, for example you’d normally use one for up to an hour, and you can wear them pretty much any time you’re active e.g. at work except when you’re driving and sleeping (because you cant get tangled up in the wires). Ask at your GP about nurses at your surgery that are TENS machine trained.
It is normal to have pain when moving, tensing up, breathing or even laughing too much? My doctor mentioned nerve damage.
Not normal, and actually “nerve damage” can be an unhelpful phrase, your nerves aren’t broken they’re just continuing to signal pain. Every sensation you feel goes to your brain, pain is the error messages sent to your brain.
Is it normal to feel this bad three months after surgery?
Surgery has risks and as mentioned before you can still different types of pains. In reality we normally say to allow up to six months after your surgery to feel like you’ve recovered from surgery, and to feel like you had the energy levels from before your operation. We can work as a two-person team when we operate on you from two perspectives, but that’s also time consuming (and to be honest expensive) so we work together to get the best outcome from symptoms that we can for our patient.
Do you speak to your patients directly following their surgery? I’ve had my consultant speak to me when I’m still coming around from the operation.
It is important to talk to your patient after their surgery to see how they are and repeat the detail of what you did after surgery. Patients can be in a daze following surgery, but you consultant should be providing information after your surgery and doing the best they can to explain what happened to you.
So we try to speak in plain English and write plain English on our discharge letters and when we see you in your followup appointment.
Do you film operations?
No, we don’t film surgery here, but we do take lots of photos at the start and at the end, so you can see the before and after.
Memory space an issue for us. I think the NHS will move more towards digital records and digital recordings of things. Perhaps you could bring a USB stick to your next appointment and ask to take your pictures or footage away with you. 🙂
I’ve been diagnosed with endosalpingiosis, could you tell me anything about it?
Don’t know very much about it, but I don’t find it’s linked to infertility. It’s very rare. I see about one case of endosalpingiosis a year and see a lot of endometriosis patients. It’s where the fallopian tube lining grows outside of the tubes, but it does not have an impact on fertility that I am aware of.
Why is my endometriosis coming back so quickly?
Well we don’t know why it’s there in the first place, let alone why it comes back. I did a test group for my research back in 1990, with a placebo group and half of the women got a bit better and half of the women got a bit worse. Sometimes the body can heal and mend itself, but what I do for my patients is treat them on the basis of their symptoms and their wishes around their fertility and what they want to do.
I got diagnosed after seeing lots of GP and doctors, when I went back they said I had no endometriosis?
Well endometriosis can be active and inactive, so perhaps that’s what they meant by that. Just because your endometriosis may be inactive and not causing you too much difficulty doesn’t mean that it wasn’t or isn’t there.
I’m six weeks post op, what can I do now?
Again, be normal. For treatment, I’d look to put you on the pill the mirena or the mini pill to stop your bleeding and reduce the likely hood of further bleeding and worse endometriosis, and I’d like to give you effective pain relief too to help with the pain.
I want to start a family soon, we’re thinking of starting next year, should I come off of my pill now ready for that?
I would advise that you stay on your contraceptive treatment for endometriosis until you absolutely need to stop doing it to get pregnant. I’d be delighted if I could give you one to two years of remission for endometriosis without some sort of hormonal treatment, but I would recommend you stay on it until you absolutely need to stop.
What is it about endometriosis that makes it hard to get pregnant?
With the worst endometriosis, you don’t get pregnant because of the bad quality of your eggs, it tends to be issues with transporting the egg. It sort of goes like this:
- Grade 1 – best chance
- Grade 2 – notch down
- Grade 3 – less good still
- Grade 4 – even lower
If I took 100 women 80 pregnant in a fertility trial in two years by the end of trial I’d expect 75% of the women with mild endometriosis to be pregnant by the end of the trial, maybe 50% for stage 3, and less for for stage 4, so the odds are still good.
How long does it take to come off of the injections to stop endometriosis?
Your ovaries will take up to 10 weeks after coming off it to start working properly. Treatments like this are seldom permanent though.
My Mirena has been removed, when should I start the process of getting another?
They should really be replaced every five years. So you should think about replacing when your symptoms returns. Ask about localised pain relief or general anaesthetic if you really cannot manage being conscious while one is being put in. Start your journey when you start to get symptoms, so start now if you’re experiencing pain.
Is there anything that can help with hormone levels and endometriosis?
Certainly. There’s lot of information around about nutritional ideas, but just some quick ideas, avoid caffeine, alcohol. There are other things with less evidence, like drinking filtered water, using glass bottle rather than plastic. The hard evidence is lacking for some of these ideas so always see a registered professional. Most of the diets for endometriosis that are floating around out there involve reducing the oestrogen in your diet.
We have endometriosis until the menopause, so what’s the long term risk of taking pain medicine for most of our adult life?
This is a whole another topic, but the short answer is, it depends on the type of medication that you’re on.
For example anti inflammatories can have an impact on your stomach lining when taken over a long period of time. Our bodies are not very tolerant to things like codeine and tramadol.
I would spare taking the strong medicines that you’re taking for when you really need them. Keep taking the strong medicines to the minimum where you can. For example try to have rest days (when you know you won’t have much to do) from your medication to allow your body to rest.
The big risk with long term opiates in particular (like morphine) are the increased risk of overdoses, in America in particular they have issues with increased death risks through increased risk of overdose. Avoid routine high doses of opiates if you can.
Are there any trials or research into endometriosis happening?
St Michael’s is part of a global trial into a new drug therapy for endometriosis. It works in a similar way to zoladex, instead it’s a tablet version. You take it every day, and we’re accepting patients on to the trial until the end of February. There are a lot of criteria to be applicable and it does mean having to come off of any existing medicines that you’re on. There’s also that fact that because we have a control group, that you may be given the placebo chalk tablet, and you won’t know if you’re the part of the group taking the medicine.
The side effects of this new drug include nausea. One of the positives is there’s no flare effect like with some of the other treatments (where you feel worse for a short period of time after you take the medication).