Endo was diagnosed nearly 3 weeks ago, saw my consultant and he said to carry on with pain relief for now. Only treatment option is hysterectomy and oophrectomy due to previous dvt, he is hesitant to do this due to my age (37). Both my ovaries and fallopian tubes are adhered to eachother behind my womb and i have active endo on the back of my womb. I got upset when he said to carry on with pain relief as it feels like he is just delaying the inevitable. My endo was diagnosed during sterilization so fertility is not a problem for me. I suffer with severe pain on both sides, i regular limp when i am on my period. Bowel movements can be excruciating during my period, bloating, and the most awful mood swings, i really have to restrain myself the week before my period else i would end up with everyone hating me.
Is anyone else facing this treatment option?
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Yes me - I got diagnosed two weeks ago, so far all I've been told is hyster inc ovaries, tubes etc, they didn't treat any endo as said too severe to try, I've got another appointment next week. Having the op isn't an issue, not really, I'm 41, I have grown up/ teenage children, thankfully so from that side of things it's fine but it's all the confusion with removal of ovaries, hrt etc, they say before 45 is risking osteoporosis and heart disease, but that aside I want to know that when they do the hyster that they remove as much endo as they can, as it seems pointless to leave it there as I keep hearing that a hyster doesn't always help :/
Not only that all my endo pain seems much worse since the lap xx
I have been researching all night, from what i can make out the risks of hrt are only for over 50's. Also i think if hrt involves oestrogen then yes it will still feed the endo. However as i have had a previous dvt, i cannot have oestrogen, only progesterone so gynae said my endo will dry up????
I definately have lots of questions too, thankfully my gp is gynae too (not the same one i saw at the hospital) and she is really supportive and has said i can go and see her anytime for second opinion which i fully intend to do before i go back to the hospital.
I am currently on my first period since lap but the pain seems similar to how it usually is, maybe slightly less painful as i haven't had double over spasms but early days.
There is another option possibly. That is to have one of the ovaries removed, the other one disconnected from the back of the uterus.
The endo at the back of the uterus is in the POD, or pouch of douglas, and a very common site for endo blood to accumulate when it cannot escape out of the body, and lesions there can do all sorts of damage to the colon and bowel too.
A good surgeon should be able to significantly reduce the endo lesions in the POD.
Another option instead of having the whole uterus out is to cook the inside of it.
Microwave Endometrial Ablation MEA (If i've spelled it correctly) is where a wand it inserted up from below, in to the uterus and on the end of it is an element that basically fries the lining of the uterus to prevent it from bleeding when you would normally have periods in the future.
This has the benefit of stopping periods, but still retaining a working ovary to protect your heart and bone density for a few more years.
Have you tried the mirena coil too? As this can only be inserted in to a uterus to stop your periods, it can prove a very useful means of stopping periods for a few years (but the down side is it does take 5 months or so to get working) Well worth it when it does.
If your friendly GP thinks you might benefit from having the bowel symptoms looked in to more closely, then a referal to one of the accreddited endo centres in the UK might be a good idea as they do have colorectal surgeons on the surgical teams. All of them do.
then the following websites provide a greater insite in to endo and your bowels.
some are a bit academic but it's worth reading through them and saving them in favourites, so you can refer back to them if you need to in the near future.
If you can manage to cope with one ovary for a few more years it can make a significant difference to your quality of life in older age, especially if HRT is not an option.
The ovaries are not just about hatching eggs, they have a significant part to play in many aspects of female health not just reproduction, so unless there is a life threatening reason forcing you to be rid of them, it is better to keep one going as long as possible and hopefully till you naturally menopause.
Having an ovary working doesn't mean you have to put up with periods either. The coil or MEA can stop periods in the meantime from adding to your troubles.
My surgeon advised me that the NHS prefer not to do TAH Total abdominal hysterectomy if you are still under 50 where possible. Because of the long term implications.
It could offer you short term relief and then lumber you will all sorts of medical problems in your retirement years when I'm sure you'd rather be wanting to enjoy that time of life.
there is a lot to consider and several options to learn about. If you read up on as much as possible and arm yourself with the information you need to discuss this is detail with your GP, gynaecologist and also possibly get refered to a colorectal endo specialist surgeon too.
and then there is the following article in a recent Daily Mail
Please ask for referral to a specialist surgeon - they deal with the most complex cases and often work with bowel surgeons.
For some women, a total hyst with bso is a good treatment option. For others, their endo returns and is far more difficult to treat. These women are in a living hell with pain that's far worse than before and little that can be done.
I imagine a specialist would want you to take a course of something like zoladex to shrink any endo before surgery - this could be a good idea as it would tell you whether having both ovaries out will ease your symptoms (obviously it can't do anything about adhesions). However, it can also make endo smaller and therefore harder to see and remove during surgery so I would discuss this with a specialist and get their input.
You've only just been diagnosed and a hyst is far from your only option, it's not even your best option in my opinion since the success varies dramatically - your best option is excision surgery by a specialist as that could relieve your symptoms without such major and irreversible surgery. There are also hormonal treatments that could help and are reversible.
Your gynae may not be able to do this but he should give you the option of seeing someone who can. As you cannot take oestrogen based HRT, the side effects of a surgical menopause alone could be horrific and something you should avoid as long as possible.
Thank you so much for the replies here, it certainly appears that there are far more options available than first thought. However I have been in agony since early yesterday evening and have only had 4 hours sleep. My Gp has give me tramadol which hasn't helped. I am hoping the pain will ease when my period finishes then I can have a good read of all the information here. The way I feel right now I would happily have it all taken out. I am really apprehensive about the hysterectomy but I also don't want to get caught in an endless cycle of laps either. I have tried the mirena coil and had to have it removed after 6 weeks of continuous full flow and pain that almost felt like the coil was spinning inside me. Progesterone used to work brilliantly for me and I have been on the depo injections a few times but the last time was the same as the mirena and I was given the pill to stop the bleeding which is how I came to have the dvt. As if endo isn't complicated enough eh. Again, thank you for all your help and advise, when I am a bit more with it and of sound mind I will have a good read and speak with my Gp about other possible options. Its good to know there are specialist centres in the uk as everything seems to be viber the states. One quick question, have any of you followed the endo diet and found it helps at all? X
I was told hysterectomy and oophrectomy was my only hope by my first consultant. I changed consultants and had total peritonial radical excision surgery. That was over 2 years ago now and I have had no signs of endo or pain since. I have not had to take hormone drugs and I still have all my bits and pieces. I would ask for a second opinion from an endo speialist surgeon. Be wary of a gynae who treats endo as one of the many strings to their bow rather than having focussed all their attention on endo. Gynaes specialise in hysterectomies.
Also remember that, although I know the pain of endo is absolutely debilitating, you can take your time to find the treatment that you feel comfortable with rather than rush into anything. Take your time and research.
Hi quick update, I had excision surgery with Mr Rowlands at Arrowe Park in may, endo everywhere, he removed left ovary and bother tubes and inserted mirena. I go back 1st Dec to discuss his findings. Mirena hasn't stopped periods, they are all over the place and pain has reduced in frequency but it can still be excruciating x
Definitely more knowledgeable but I am disappointed that he didn't come and see me after surgery to let me know what he found, what he did and if he needs to do more. I guess I'll find out more in December, only another 2 months, waited 4 so far x
Hi....sorry to hear you are faced with the hysterectomy choice. I was 32 when I had mine hysterectomy and oophorectomy, and cervix.
I have been on HRT for six months now and to be honest I don't think I could have managed without it. Due to my age I will be on it for almost 18 years. I spoke to my Dr. and eventually decided that the pros outweighed the cons.
I am sure you will make the right choice for you x
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