I have been suffering from severe endometriosis for many years, but in November 2015, I began having severe pain due to an endometrioma on my left ovary and fallopian tube. I had a laparoscopy in February when the endometrioma was drained and adhesions removed. Three to four weeks after surgery the pain returned and recently the pain skyrocketed. I have since had a scan and the endometrioma has returned and another one has formed, which are both pushing up against my peritoneum, which the Dr. mentioned can cause pain similar to that experienced with appendicitis.
Given abysmal care on the NHS, I have met with a private endometriosis specialist/surgeon, who has indicated that I am likely to have two options (to be confirmed with the next scan, which is scheduled for today). I can have my ovary removed OR I can have a hysterectomy. The latter is likely to give me a better longer-term option but of course comes with more risk - risk from a more complicated surgery, but also breast cancer risk given my family history if I should take HRT. I am 42yo and do not want children so saving my ovaries for fertility reasons is not a concern.
I also have the option to have this done on the NHS, though the wait time would be 6-12 months. The thought of being in this much pain and having to take such powerful painkillers for 6-12 months longer is depressing - I already feel like my life has been largely on hold since November 2015.
The other option is to have this done privately, which I would have to self-pay at the cost of about £10,200. As I received such terrible after care from my surgery in February, I would likely pay for private recovery anyway.
I would like to hear experiences from those who have pursued these options - Hysterectomy vs. ovary removal and NHS vs. private.
I would also be keen to learn about pain coping mechanisms in the meantime. I find I am ultra-irritable - noises especially drive me mad; I am less ambitious professionally; and generally unsure about the future, etc.
Thank you for your help!
Stacy
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stacynicole
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I am currently in the process of making a decision about a hysterectomy and removal of ovaries. I am 39. I have rectovaginal endo, bowel endo, adenomyosis, and my ovaries are stuck to the back of my uterus which is firmly stuck to the bowel on the right. I've so far had one surgery, where the surgeon intended to treat the endo but found it was just too severe so didn't do anything.
I had that surgery done at a private hospital as an NHS funded patient and it was honestly the worst experience of my entire life. I was discharged same day, sent home with ibuprofen and paracetamol. Unfortunately I went on to develop complications after the surgery (I had an internal haemorrhage). We contacted the private hospital multiple times as my pain progressed throughout the evening and they were completely disinterested and refused to readmit me, telling us it was simply gas pain. I ended up being taken to A&E in an ambulance at midnight in unbearable pain (and I say this as someone who has had 2 children without pain relief) and the NHS were left to clean up the mess. So first off, don't assume that because it's private, it will be superior, because that's not necessarily the case.
Following on from that, the gynae at the private hospital recommended a hysterectomy and removal of ovaries but admitted after several months of faffing around that the surgery was too difficult for him and I was referred to a bsge centre in London, which is where I am now being seen. I am having an exploratory lap in November where they will fully assess the extent of the disease so that they can plan a second surgery (they are recommending a hyst) which will be carried out in February.
If you are not being seen at one of these centres (there is a list, you can google it), please don't agree to any surgery anywhere else and get yourself referred to one. Your GP can do this for you. It is a completely different service - the dr's are endo specialists, they can do excision and keyhole surgery that you will not get with a general gynae, and they are far more qualified to deal with the disease. They will be able to tell you whether a hysterectomy is really necessary or not.
Re the HRT - I have been told that it does not increase the risk of breast cancer unless you take it after the time at which you would naturally have entered menopause, so after around 50. The risk of osteoporosis/heart disease due to early menopause if you don't take hrt is also far more significant than the risk of breast cancer.
With regards to the pain - have you been offered any sort of treatment to keep you going for the next few months? I've had decapeptyl, norethisterone and now cerazette so far this year which are giving me enough pain relief that I can manage.
Thank you for sharing your experience. The private Dr. I am seeing is from a BSGE centre - in fact, he leads one and has come recommended as the best by several medical professionals. Your experience post-surgery is similar to what I experienced in the NHS, and thus I will raise such questions specifically with him about what after-care I would expect to receive, what is covered by the surgery payment, etc. So thank you!
I have been referred to a pain management centre on the NHS though of course I have only seen her once and don't have another appointment for 6 weeks. I am on codeine phosphate (two per 4 hours with paracetamol as I cannot have ibuprofen given endometrioma and bleeding there) and I finally got Oxocodone for when the pain is the most severe. I had to go to a private Dr. to get the pain relief as the NHS was not taking my pain seriously. I issued a formal complaint about this, and while it was investigated, the outcome resulted in two letters from the Drs. involved along the lines of 'I'm sorry you felt your pain was not taken seriously; I'm sorry you feel that you did not receive the care you deserved.'
I will look up the pain relief you are on to see if it could be something to explore. The pain medication I'm on now takes the severe pain to a bearable level though of course my pain tolerance is very high now.
I am sorry you've had such a terrible experience but I'm glad to hear that you are seeing a decent surgeon now. Has he offered you any hormone treatments? I have been told that I will be put back on a gnrh analogue for 3 months after the surgery in november to put me in temporary menopause and try and shrink the endo as much as possible.
It might also be worth asking if he thinks you will need a bowel surgeon or a urologist (I will need both) as this could bump the cost up quite a bit.
Pain relief wise, the cerazette is to try and stop my bleeding, but I also use diclofenac suppositories, mefenamic acid and tramadol. I find that codeine isn't enough so I've abandoned it now (plus it makes me throw up). I do use over the counter strength co-codamol which I combine with the mefenamic acid and diclofenac and find I can tolerate that. All these were NHS prescribed without a pain clinic. I'd say I'm surprised that you couldn't get them from the NHS but then I spent most of 2014/15 being told that I had IBS so nothing surprises me any more :/
hope things go well for you and you get some relief from it soon, it really is a vile disease.
Stacy do you have endo outside your uterus? And covering other organs like me? As hystromectomy is not a cure! That being said is although u have this aggressive surgery the endo will always be there and continue to grow even without your carriage, endo uses fibrin and keeps thriving and growing thus reacurring.
I had long history of undiagnosed endometriosis trying all sorts to relieve hideous pain/periods. I have private medical insurance and after seeing 2 consultants was referred to a specialist privately. In the waiting room an elderly lady told me a great story about the consultant I was about to see. He in my eyes lived up to his reputation. I received excellent care, felt fully informed and in control of my decision making with assistance from a specialist nurse who looked after my emotions. At 48 I decided that the stage 4 endo, adenomyosis and bowel implication had beaten me and opted for total hysterectomy with bowel resection. I needed a bowel surgeon too. The surgery was uncomplicated and I behaved better during surgery not requiring a high dependency short stay as originally planned.
Once home I struggled with severe vomitting-the hospital after care service was great and re-admitted me very quickly, sorted me out and got me home again where I recovered very quickly.
Whilst I don't have NHS experience I can only speak highly of my surgeons and their teams. Good luck with your decisions
Thank you for sharing your experience as it gives me hope. I don't think I can wait for the NHS surgery (estimated waiting time of 6-12 mo) as I'm in so much pain so likely will go private. I'm in agony most of the time and just can't bear it any longer.
Hi Stacy. I am not an expert, but I am surprised a hysterectomy has been suggested. It is not a cure for endo. It is only the answer for ladies with adenomyosis. If anything, imissed endo after a hysterectomy can actually be made worse by HRT. I am assuming that you are doing lots of research? Have you looked at endometropolis on Facebook? Or endopaedia.org. Both have been invaluable to me.
I have just had three large, invasive endometriomas removed by one of the top endo specialists in the UK. One had ruptured and it wasn't safe to proceed with full excision. I have fairly extensive endo. So once the inflammation and infection has gone, I will have the excision. I do have adenomyosis, but I will give it time to see how much relief I get from the endo excision before I consider a hysterectomy (I am 41).
I have seen my consultant privately, I felt let down by the NHS. I cannot fault my experience. I was in for two nights and was very well looked after. My consultant came to see me after the procedure and rang me the next day when he was at his NHS hospital. My procedure was two weeks after my initial consultation. The wait was twelve weeks if I'd transferred to his NHS list.
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PS when he gets in there he may be able to save your ovary. My endometriomas were in both and I consented to have them removed if necessary but he saved them!!
After my scan on Thursday, it looks like the best option is for left ovary and Fallopian tube removal, but will confirm next week. Thank you for the links to those websites as I'm doing as much research as I can. I do have adeonymosis.
I can’t offer you any advice I’m afraid but your post could have been written by me (with the exception of the paying privately part)!
I’m 45 and was diagnosed 15 or so years ago. I’ve had 4 surgeries and various hormone treatments, but pain has been getting worse again over the past few months. I saw my consultant yesterday and had an ultrasound which showed cysts on both ovaries again, so he has said I should choose between another basic lap followed by more hormone treatment, or removal of both ovaries or total hysterectomy. I too have family history of breast cancer (my mum has had a double mastectomy and was told to immediately come off HRT) so I’m not keen on the idea of taking HRT at all.
Until now, I have been told that a hysterectomy wouldn’t help my symptoms anyway because a lot of my pain is now nerve damage and adhesions, but since I keep getting cysts (despite them being excised in the past, not even just drained), the recommendation seems now to be swaying towards ovary removal at least. I used to have private medical cover with my work but sadly no longer do, so I’m on the NHS. I am incredibly lucky to live near to the Oxford Endometriosis Centre though, so I do have total faith in the care I receive there.
I’ll be really interested to see what advice you receive from others who may have already made this decision, and also what you decide to do in the end. I’m now waiting for blood tests to check for nothing more sinister and then I guess my GP will go through the findings once my consultant has sent her the report.
Then it’s down to me and at the moment I change my mind every five minutes!
So sorry to hear your pain is really bad and I hope you find something which helps you through the next few months.
I've now been diagnosed with Endo and Adenymosis, and for the latter a hysterectomy is recommended. As symptoms are very similar, it is difficult to tell what is causing what pain. I am having a hysterectomy with the removal of both ovaries, as that is what my surgeon who comes highly recommended has suggested. Apparently, a further surgery is 8x more likely and the surgery would be more complicated. Also, I've learned that my bowel is connected to my uterus so we don't want that to get worse. I'm now waiting on a surgery date and for private insurance approval.
Hi Stacy. I realised after replying to your original post that there had been a lot of responses since! I really hope that you get your insurance sorted quickly so that you can get a date for your surgery as soon as possible. Best of luck with it all. R
I know we can't recommend people specifically but there is a doctor who's surname begins with T. He has helped many women in your situation. He comes up quite high on Google too when you google for endometriosis consultants, read his website and testimonials it really is amazing what he's done
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but I'm glad to hear that you are seeing a decent surgeon now. Has he offered you any hormone treatments? I have been told that I will be put back on a gnrh analogue for 3 months after the surgery in november to put me in temporary menopause and try and shrink the endo as much as possible. 
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