Went to see bsge specialist yesterday for first consultation after referral from my general gyny. Outcome is I have left hydrosalpinx and maybe also right hydrosalpinx, probably have adhesions from past 2 bowel surgeries not related to endo and maybe also have endo. 1 surgical treatment he has suggested is doing a hysterectomy and bilateral salpingo oopherectomy laparoscopically.
Just wondering if anybody here has had that procedure done and can tell me anything about it please?
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sarahgregory
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Hi, I had a laparoscopic hysterectomy and BSO 15 weeks ago for a failed Endometrial abalation, endometriosis and Adenomyosis. Happy to answer any questions. 😀
Hello I have had a left salpingo-oophorectomy in March, my bowel shaved as I had endometriosis invading my rectum and endometriosis excised and my internals all unstuck. I had this done by a bsge specialist. Happy to answer any questions
Hi, just rereading the replies to my post as I have now received my clinic letter from the specialist, I asked for a copy to be sent to me, and it reminded me that he also said he would shave any endo off my bowel. Do you know if this is supposed to stop endo returning? X
Have you had a laparoscopy to see where endo is, ???
Not sure that a hysterectomy would help uf you have Endo else where, I've had a hysterectomy for adenomyosis and I still get daily endo pain, I'm awaiting a further laparoscopy now with bsge centre to see if any endo was lef t . Endo will still Carry on feeding itself without overies. Xxx
Hi, I'm happy to help also, 4 weeks tomorrow post op from total hysterectomy/BSO, severe rectovaginal endometriosis excision, bowel and rectal surgery and an large number of other issues due to endo. I am feeling really quite good I had surgery with a BSGE specialist and also with a colorectal surgeon from the same team. Do not know 100% what was found. I'm not able to see him for 6 week post OP appointment nearest available appointment is nearly 12 weeks post OP. Here to help Sarah-Kate xx
Sorry to say this, but personally I think that your consultant is suggesting something VERY drastic, and maybe out of proportion to your issues. I can see from your question that you have no idea what he is talking about, so clearly he did not explain very well.
You say that you have a left hydrosalpinx, and possibly right as well, maybe also adhesions and endo. The right hydrosalpinx, adhesions and endo are things you do not sound certain about - you only maybe have them.
A hysterectomy with bilateral salpingo oophorectomy is basically total and complete removal of your uterus, plus both ovaries and fallopian tubes. This means in a nutshell that ALL your "lady parts" internally will be gone! Once this is done, you will become menopausal, and as a result you will have to go on hormone replacement therapy. Now, there are pros and cons to this. The pros are that you will no longer have periods, and many doctors seem to think that if they stop you having periods, they can stop things like endo and other gynae problems too. They also think they will put an end to any problems like period related pain, or heavy and irregular periods, that you may be having. However, the cons are as follows. Some women can have this surgery done, but still have endo. Endo can grow anywhere in the pelvis (and sometimes outside), and if every tiny bit of it is not fully removed, it can continue to lurk and grow, causing pain and symptoms. Another HUGE con is the fact that you will be menopausal - most likely prematurely. This not only means having ALL the symptoms of menopause, but it also means going on HRT. It also puts you at greater risk of osteoporosis and some cancers. This risk can be reduced by taking HRT, but it is still a risk. Finally, even if done via lap, the removal of your uterus and both ovaries is a big thing and takes some time to recover from physically. The mental recovery can be even longer, as some women can feel very upset, angry or freaked-out once the realization kicks in that they have no longer got "lady parts". Remember - your uterus and ovaries are what you need to conceive children.
Before you go ahead with something as radical and drastic as this, you really do need to think ALL your options through. First of all, you don't even know if you actually HAVE endo. It seems a bit much to suggest hysterectomy and removal of your ovaries, if the consultant cannot even confirm and prove a diagnosis that means this is necessary! The FIRST and most appropriate - "gold standard" - way to confirm a woman has endo is to perform an MRI scan to see if it shows up, and then to undertake a diagnostic lap. The MRI can sometimes show endo before surgery, and may be used to help locate really obvious growths. However, only a diagnostic lap can fully confirm the presence of endo. Following the diagnostic lap, you should ideally be told what stage your endo was (i.e. its severity) and where it was. Some surgeons combine a diagnostic lap with treatment, and they will often laser away superficial endo growths. If endo is more severe or extensive, they may prefer to perform a further surgery later on, after they have discussed matters with you.
THIS is what I think you should be having. Until you know exactly what you are dealing with, it is pointless to talk about hysterectomy and oophorectomy. There ARE other alternatives which are far less drastic! As to the hydrosalpinx, well this is basically a medical name for a blocked fallopian tube. Tubes can become blocked for a variety of reasons, including infection, and also endo. Diagnosis of hydrosalpinx can only be confirmed via ultrasound scan, hydrosalpingogram (where dye is inserted into the fallopian tubes and uterus whilst you are x-rayed to show blockages), or during a diagnostic lap surgery. If you have NOT had any of these treatments, then it is hard to believe that your consultant can be certain you even have a hydrosalpinx. Even if you do, it is appropriate to discuss various options to a) confirm the diagnosis, and b) to see if you could have surgery to unblock the tube.
In some cases hydrosalpinx cannot be unblocked, and this impairs fertility. Where this is the case, any consultant ought to refer you to an IVF specialist. It is ALWAYS important to consider fertility when discussing gynae problems - especially when a consultant is talking about treatment or surgery that may impair fertility. You do not say whether you have kids, or whether you don't. You also do not say if you intend to have kids (or more kids) in the future. You don't say how old you are, or whether you are naturally nearing menopause. You don't say whether becoming artificially menopausal is something that you could accept. If you plan on getting pregnant in the future, then it is obvious that hysterectomy and bilateral removal of ovaries will make this impossible naturally. You will require IVF. I am surprised that nobody has discussed such matters with you, because they are VERY important, and have a huge impact upon the sort of treatment that is relevant.
Personally - and this is just PERSONAL opinion - I would ask for a second opinion. I would request the opportunity to explore and discuss ALL your different options. I would also want to know if a diagnosis of endo, hydrosalpinx and adhesions had been confirmed before going on to make decisions about treatment. Maybe the option of a diagnostic lap would be best suited to your situation at present, as it would allow the consultant to go in (but under minimally invasive conditions) to see if endo IS growing in your pelvis, and to see if there ARE adhesions present. At the moment, nobody even knows if that definitely is the case. Also, a diagnostic lap can be converted to provide treatment - if you have superficial endo, or small adhesions, these could be lasered away. Even if your endo turns out to be more extensive, or your adhesions tougher and more fibrous, a diagnostic lap allows a surgeon to visualize clearly where they are and what treatment may be required to deal with them. Once this is clearer, you can discuss all the options is a WELL-INFORMED manner and pick the treatment that is most appropriate for YOU.
Remember - this is YOUR body, and YOU have to live with the consequences of any treatment you do or do not choose to have. Furthermore, it is good professional practice for anyone working in a medical or health care capacity to ensure that a patient only receives treatment following INFORMED CONSENT. What this basically means is that you should be provided with the appropriate and necessary information to permit you to understand any treatment you may be having, its pros and cons (including risks and side-effects), to ask questions about it, and to decide whether to go ahead or not. You should also be provided with information about any alternative treatment options, so you can compare these and choose the one you feel most comfortable with. Failure to provide information and opportunities to ask questions, and to have things fully explained to you, amounts to poor practice.
I'd advise getting a bit more clued-up, and maybe taking time to think about what it is that you want any treatment to accomplish. Is this about pain management? Reduction of symptoms? Do you want to try to retain your fertility? Are you interested, or not interested, in getting pregnant? Have you had all the kids you want, or do you maybe not want kids at all? What does your husband or partner think? Would you wish to consider IVF? These are ALL important considerations, especially when it comes to finding the right treatment for YOU.
There are some websites that provide information to consider. You might like to try...
asrm.org/FACTSHEET_Hydrosal... (This is an American web page, but it still gives lots of easy-to-read, and understand, information about hydrosalpinx, diagnosis and treatment).
Endometriosis UK website (type Endometriosis UK into any search engine) - this website gives LOADS of really useful information about endo. It describes symptoms, treatment options, common myths and fallacies. It also has discussion forums, and personal stories written by women who have experienced living with endo.
infertilitynetworkuk.com (Please don't think I'm instantly suggesting you're infertile... I AM NOT. Instead, I am suggesting that you take a look at this website just in case IVF is an option you wish to consider. There is plenty of information on the website about IVF. There is also information about gynae conditions that may lead to infertility, or that increase the risk of infertility. Various different treatment options are discussed. There are forums, and real life stories. It may be that you are perfectly able to conceive naturally at the end of the day, but this website is there, should you be in a situation where natural conception is not an option. Just to show you that if you ARE eager to be pregnant, there are still various options out there, even if you can't conceive naturally).
I am sorry for such a long reply, but I do hope that there is information here that could be helpful to you. Whatever decisions you make, please try to make them based on sound advice and information. Make sure that you have the opportunity to discuss matters with your consultant, and to ask questions that you feel you need to ask. If you are at risk of infertility, this will impact upon your husband or partner too, so ensure that they have a chance to discuss matters as well. Best of luck. x
Thank you all for your replies, this is a great site for talking things through with people going through similar things.
I think I probably needed to give you all some more info. Please click on my name and read my very first post which gives my history.
I am 44 next month, I was told 17 years ago, when had my daughter per my details of history in my very first post on this website, by my gyny then (who was also my gyny I saw who referred me to this bsge centre) and my surgeon that it was advisable to my wellbeing that I didn't have any more children as there may be complications and risks to my life so I have known for a long time I would not be having any more so the emotional side of having a hysterectomy is not there for me. I have been on Prostap for the last 4.5 months with therefore a medical menopause and have not had any major side effects (occasional hot sweat in bed so chuck of duvet then ok) so I am presuming the real menopause after hysterectomy would be the same.
I had been seeing my general gyny for about 14 months and had lots of ultrasounds, MRI's and CA125 blood tests plus a colonoscopy (which was clear) prior to seeing the bsge consultant and he had all my copies. He looked at my MRI mainly and said that the left was definitely a hydrosalpinx and the right could be as well. He also did an internal exam and an internal ultrasound while I was there (appointment lasted an hour!) and said things didn't look typical of endo from MRI and other scans but due to my complicated history and therefore how my insides looked he couldn't be sure.
After talking to me he knew that fertility wasn't an issue and agreed with my general gyny that it would be preferable that this was a once and only operation to limit any further complications (the colorectal surgeon I saw for colonoscopy told me "my daughter needs a mother" so this shows how complicated any operation on me would be). He gave me 3 options. 1, do nothing (not an option as can't go on like this), 2, have a diagnostic lap (would have to go in under breast as previous scars cover belly bottom where a normal lap is done) and sort fallopian tubes, excision of any endo and remove adhesions found and hope this works (he also said that he might not even be able to get in via lap due to my history and that he didn't think a diagnostic approach would show any more than he could see on MRI and it might not help with my symptoms) or 3, do lap as option 2 but also do full pelvic clearance via lap but if not able to get in via lap then turn it into laparotomy to do it all.
He obviously didn't tell me what I ought to do as in the end it is my decision.
Hi Sarah, I had a TAH,BSO and excision with a specialist at a BSGE centre on 3rd March. I was on Zoladex for six months prior to op.
While I think given your situation a hysterectomy maybe beneficial for you I just wanted to let you know that 1 you have my full support 2 I'm here any time you want to talk.
With regards to hot flushes I had them whilst on Zoladex but once I had the op they were so much worse. I got to the point where if one came on I would feel so ill I had to sit down.
Six weeks after op I was put on tibalone, which effectively converts what you have into what you need.
Seeing as I didn't have any oestrogen I still had none with this, so it really didn't help.
Changed over to Elleste solo and within in 2 days I started to notice a difference. I've now been on them for a week and I've not had one for nearly 3days.
If you have any questions just let me know I'm more than happy to answer anything you might want to know. Take care Hun.
Hi Jean, thanks for your lovely kind words. You are always very informative, helpful and kind to all us ladies on here. How are you doing? Has your bladder problems settled down? How were you when you went back to work? Hope you are ok. Glad the Elleste solo is working for you, I haven't heard of that one, only really heard of Livial.
Did you have yours via laparoscopy or via laparotomy? How long were you in hospital and how long were you off work?
Hi Sarah, i had a laparotomy and ended up staying in for five nights as I had an internal bleed which stopped on its own but needed a blood transfusion and I've antibiotics. I still have the bladder issues but consultant insists it will settle down, so will have to wait and see.
I only went back to work this Monday and it's been really hard . Not been a good week. Found out I've got an under active thyroid , then discovered I've got 3 herniated discs which are seriously comprising the nerves so going for mri to find out full extent of damage.
Tibalone is livial. I was off work for about 12 weeks in the end and to be honest I think I could probably of done with a bit longer but really couldn't afford to stay off any longer.
The first couple of days after op was really painful but after that I was fine.
Was told not bend stretch or lift any thing for six weeks.
At about five weeks popped up the shop and carried a small bag of food home not particularly heavy and I could really feel my muscles pulling. Felt very achy for a few days.
I think the worst thing afterwards was the constipation but I found warm prune juice, camomile and spearmint tea and a fibre supplement really helped. Also glycerin suppositories. Also swallowing a couple of teaspoons of oil to help lubricate.
If there is anything you want to know I'm happy to help Hun. Take care.
O wow Jean, I knew you had been through a lot from other posts but you really are having to put up with a lot. Hope the MRI shows something that can be sorted. Thanks again and take care and don't overdo things at work either. All the very best xx
Anyone no how to get an appointment at the centre I have been passed between 2 different consultants in 2 different types hospitals it's driving me insane as the first failed to diagnose even though in family history and now it's all in my bowel etc waiting for surgery but would like to see them before I go for it thank you xx
Hi, I looked on the bsge website for my local ones and then googled the consultants to find 1 I wanted to go see and then asked my general gyny I had been seeing to write a referral letter to the specialist, my gp also said she would have done it if my gyny wouldn't. Have a look on here for a lady called Lindle and click on her name as she has loads of posts about how to get a referral etc to a bsge specialist.
If you can afford about £200 you can make your own appointment privately with a bsge specialist for an initial consultation and then just transfer over to his NHS list after that if you can't afford any more.
Also just seen that on the top right of this post under "related posts" is a post entitled "how to find an endometriosis specialist centre" and this is a post by Lindle who I mentioned before in my other reply to you X
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