Advice needed if anyone also has superficial endometriosis? I have had conflicting advice.
End of September I had a clear MRI with a private specialist surgeon, he said it was likely Superficial Endometriosis and he would give me a diagnostic laparoscopy and remove anything he found with excision surgery. I unfortunately could not afford this.
Five days ago I had another clear transvaginal ultrasound through a Gynaecology dept in NHS.
My previous was at the end of May and she said said my painful periods were due to coming off the combined pill after a couple of decades. I was obviously ill advised by an experienced person.
This second ultrasound was painful as she was probing areas. It caused awful nerve pain in the rectal area. Which I wasn’t happy about. The whole appointment felt rushed and a bit traumatic.
She advised me NOT to have a laparoscopy as women with Superficial Endo do not experience pain relief from it. She could not really confirm if it would be done by ablation or excision or what surgeon it would be, she also did not recognise the names of Endo specialists within the same hospital listed on the BSGE.
I asked to be put on the waiting list for diagnostic laparoscopy but on reflection I am not confident with the people I have seen through the NHS so far. I need someone who knows what they are looking for. I don’t feel happy not knowing who will perform the operation. With the private clinic I was speaking with the surgeon who would do the operation the whole time.
I will be asking for a second opinion with a specialist hopefully.
Has anyone been advised not to have a laparoscopy if they have Superficial Endometriosis?
Is it safe to just leave it and carry on with hormones?
Really appreciate anyone’s insights, thank you!
Written by
Circe3
To view profiles and participate in discussions please or .
Hi there, I’ve got superficial Endo. Mine was diagnosed through Laparoscopy when I shadow problems conceiving. I’ve always been under the impression that it can’t be diagnosed unless physically seen during a surgery. I suspect this why they couldn’t tell you which method of Endo removal would be used.
The NHS person you saw is 100% incorrect about the surgery not helping with pain though. I’ve had a total of 3 Laparoscopies for Endo symptoms, and waiting for the last one I was in horrendous pain down one side of my pelvis/hip. That pain dissipated after the surgery. While waiting for the surgery, I had to be prescribed Naproxen for the pain. Whilst effective, I was ‘off my face’, due to the strength required. It made it very difficult for me to be effective at work.
In terms of leaving the Endo alone, that’s what the NHS generally prefers to do, unless it’s interfering with fertility or causing pain.
Yes I am not trying to conceive and that seems to be the problem with the NHS. If you’re not having a child they are not really interested in investigating. It feels discriminatory and quite dangerous to just push people aside.
It’s interesting to hear that she is incorrect, I believe her opinion is based on the fact the surgeons she works with all use ablation which doesn’t rid of all of the Endo leision. Did you have excision surgery? I did explain this to her, I definitely knew more than she did which was concerning.
Will definitely get a 2nd opinion thank you. Great to hear your finding relief!
It is very dificult being given conflicting advice. it really adds to the stress.
The idea that endo can't be diagnosed unless physically seen is I'm afraid very out of date ten /fifteen years ago this was the case but not now. MRI is now considered the gold standard for endo diagnosis and can often show up things like adenomysiosis which can be easily missed at a lap. A laparoscopy sounds like a very minor thing but it isn't really it leaves a lot of scarring and adehesions inside so it is best to avoid it unless it is really necessary. I have stage 4 endo which is very bad and have seen 4 top surgeons all of whom have refused to opertae on me because the scarring internally is so bad from the previous two laps.
The national clinical guidelines for best practice do state that excision is not meant to be used on superficial endo and that hormonal treatment is the best way to go.
However, the quality of scans is very very variable. at my first scan I was told i Had stage two endo then two years later after excision i was told i had stage 4 and a full frozen pelvis. I am not certain the scan was done by a sonographer with appropriate training and the operation was ineffective.
The second op was carried out privately as was the second scan. I was actually sent someone elses scan results and only found this out as they noted that an IUD was trapped and I have never had an IUD. They did find the right scan after my complaining but the excision op did not go very well.I was left with very bad internal scarring and the benefits have been few.
So I think both the NHS and the private sector have issues. The NHS are too reluctant to operate and the private sector will sometmes operate when it is not neccessary because every op is more money for the surgeon. The private guy who operated on me I have now found out has a history of botched ops and of operating too frequently on patients one woman had had 16 procedures in a year. This cannot be right as you would have no chance to heal.He has now retired.He was touted all over sites like Nancy's Nook as a great surgeon.
So a private surgeon won't always give you unbiased advice, every simple lap is another 8000-10000 into his/her pocket.
I would suggest the following get another scan, i can send you the details of the best scanner in London. He is a retired gynae surgeon as well as a sonographer who specialises only in gynae conditions and a professor within the field of endo specifically. This means he really knows what he is doing and seeing with the scan. He no longer does surgery himself so he will not push you towards surgery you don't need to make money. He will scan you ,talk through the results and then give you a half hour consultation where you can ask anything and recommend the best course of action. It cost me 400 pounds last year but it was the best money I have spent.
If you are going to have surgery it will be expensive and it will carry the risk of scarring and making any later surgery very difficult. Repeated laparoscopies make endo worse because they cause adhesions which can cause more pain and bowel obstruction etc, they should not be undertaken lightly. Spend the extra on getting another scan then decide what to do. If you do go for surgery be very careful which surgeon you choose.
Yes I wasn’t 100% happy with the private guy either as his bedside manner was lacking but this did improve dramatically in a second meeting.
I think the reason the Endo can’t be seen is because it’s superficial Endo, I have read that it can be clear on ultrasound and MRI but can be found by laparoscopy.
However I am very cautious to have any kind of Laparoscopy, it’s got to be a highly skilled person who knows what they are looking for or no one at all.
Can’t believe you were sent someone else’s scan results! What incompetence, feel very angry for you. Sorry to hear you have had scaring and pain, I hope you are healing now 🙏🏻
Great idea to have another MRI scan by someone one else, I will happily take your recommendation. I really appreciate the help and advice, thank you!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Suspected Endometriosis 
Can the NHS refer you to a endometriosis specialist for excision surgery? 
Deep infiltrating endometriosis
Endometriosis surgeon Yorkshire
